It seems as if most of the posters here have nsclc. And I've read the stories of survival. That it is curable. What I would like to ask is for the sc survivers and caregivers - can you tell me how long you (or loved one) have survived or did survive? Sorry feeling way depressed since finishing WBR.
Julie
Julie,
Please stop it right now!
You have been undergoing some tough stuff and have basically been under attack - your nerves are on edge, and for good reason.
If you go into the history, you will see that the split between SCLC and NSCLC diagnoses is about 20/80. That is why you see more NSCLC patients here - there are just more of them running around.
There are SCLC survivors running around. There are also the brave warriors that have passed. How many days/weeks/months they had have NOTHING to do with you. Except for one thing - I am a proud survivor of my daddy's SCLC - he was unfortunately diagnosed extremely late in the progression of his disease - but his oncologist and pulmonary doc gifted us with quality months that I truly do not believe he would have otherwise had - he was sliding away from us when he was diagnosed and they brought him back to a higher quality of life.
Now, Julie - we've corresponded before, so you know that I speak squarely to you - we need to have a talk here. It does not make a bit of difference what other people have gone through - remember - we've talked about statistics - it only matters what's going on with you. That's the only thing. Not a single person on earth can tell you how much time that I have left, nor your doctor, nor you. The only thing we can influence is how healthy and happy we are. And today's health and happiness increases our chances of tomorrow's health and happiness.
OK, I'm being a little preachy right now. Let me tell you a story. I decided not to get last year's physical because my dad was sick. This year, I was given several unexpected surprises - not the least of which is that my blood sugar went crazy. Like 3x normal crazy. This condition is not curable - but it can be managed with drugs, diet and exercise. Let's have a moment of honesty - I'm not fond of needles, so I'm motivated to avoid that option; diet?! not my idea of a good time; exercise?! OMG!!! I am the queen of couch taters. What I'm getting to here is that it's my choice how healthy I will be tomorrow. Am I happy about it? Crap, no. I've blown the tendons in both heels, and now limp rapidly on my daily walks. I was sniffing a bag of Snickers today. Just sniffing. And I'm making progress. I've reduced my blood sugar by 66%, my blood pressure is down 20 points, and I've dropped 17.4 pounds. (That .4 is important to me) in 2 months.
What does that have to do with you?! You have something that is not curable. It is, however, manageable and survivable. What we need to do is to help you figure out how to get your name on the long-term survivors list. You have done a great thing getting WBR - killing off the little pockets of hiding mets. You have done excellent work on minimizing side effects. You are giving inspiration to a bunch of us. I am so very proud of you.
Seek out stories of light right now - there are many out there - it will make you feel better. One other thing I found that makes me feel better is to find someone that is posting and give them an idea as to how they can have a better day (notice I practice what I preach...). There is also the possibility that you may want to ask one of your doctors to get some chemical help to get you through the post-radiation feelings. Or have a hug-a-thon....
What can we do to help you, other than run off people tempted to tell you the "how long did they have" stories???? Again - no-one on earth knows how long you'll have - so why pick at that sore????
sending big fluffy loveable hugs your way.....
Pat
Hi Julie - Pat always knows just what to say to make you feel better.
My Dad was diagnosed in late march 08 and given 6 weeks w/o treatment and possibly 3 months having treatment. He has already beat the odds by being in his 6th month. So I consider us survivors! He is responding very well to treatment and his quality of life is much better than it's been in years. At first the fear and sadness is so overwhelming but we've learned not to count the days, but rather make our days "count." I have hope for you and my Dad for lots of good years to come.
Here's wishing you some peace of mind and lots of great days ahead.
M
Julie,
You listen to Pat. As you know, I have sclc-ext. I know you feel like s--t right now and so do I but we will beat this along with all the friends we have come across on this site. Hang in there and KNOW I am thinking of you.
Skip H.
Dear Julie
My wonderful husband was diagnosed in June 2005 with small cell. To date he has had six clear scans and is definitely considered as one of the success stories.
My husband wrote about his cancer journey on a website, you may find it useful. www.johnnytherazor.co.uk.
Stay positive there is hope, honestly there is.
love and virtual hugs
Lynn
I am an sclc survivor. I was diagnosed in May 2007 and here I am, 15 months later, getting better every day. All my scans have been clear and I remain hopeful every day that they will continue to be that way. I get tired easier, but just lay down and take a short nap and stay rested.
Yes, it get's scary sometimes and I can't help but worry. However, I have a lot to live for and am determined to do just that - live and live happy. My husband and son need me and I intend to be here for them.
So, stay strong and, even though I know it's hard at times, never ever give up hope.
God Bless,
nkb
Thank you everyone for your words of wisdom and hope. Guess I've just had so many side effects from the WBR. Well I'm up, I'm dressed and ready for a new day. :-)
Julie
Hi Julie:
Sorry for everything you are going through. SCLC is tough...my dad was diagnosed in May of 2007 with extensive SCLC and passed away on May 20, 2008 at age 61. His cancer had already spread to the bones and liver at diagnosis. He had no symptoms before diagnosis, except for "acid reflux" type of things....which we later found out was because of the liver tumors. My dad was an unusual case, as his cancer was resistant to chemotherapy. He had undergone three different types of chemo and with each treatment, his cancer grew or spread. Again, his cancer was unusual and there are plenty of SCLC survivors whose cancer is able to respond to chemo. Please keep positive and remember that everyone is different and their bodies respond differently to all types of treatment. I will keep you in my prayers.
Cheryl
Hi Julie,
My mother was diagnosed with SCLC (extensive) in October 2006. My thought is, God only knows for how long she had it before actually hearing the words from the doctor. Her oncologist stated that she would live perhaps a year, maybe two IF she responded to chemo. WBR was never even offered to my mom nor was any other kind of radiation.
Well, my mother responded to chemo for about three months. She has had active tumors since then. Guess what? She is still here and is doing great, in my opinion. Since mom's diagnosis, both her brother and her sister-in-law have passed away (at young ages) so she has definitely endured stress throughout her illness.
My main point is that everyone is different. I initially listened to the statistics and my husband would always say to me, 'Will you please stop mourning your mom before her time??!!' He was right. If I had known in October 2006 that my mom would still be here in September 2008, I would not have wasted so many hours, days and weeks '...mourning her impending death...' She has an illness that is treatable even if it isn't curable.
Best of luck to you.
Take care,
Carrie
Julie-
You and I have compared stories, remember I was diagnosed Nov 06 with ext. SC and I have been clear for a year now.....and I go next week for all the tests and I am so scared. What problems are you having with the brain radiation. Remember my problems and it go better. Hang in there girl.....I know you are tough from things you have shared....
Hi Julie,
I am going to get my "mask" fitted for PCI on Friday.
My depression has been very deep at times and I haven't even started the radiation yet. I have found bright spots- out there in the world and here on this message board. I just wanted to tell you how brave you are and to pass along my ((HUGS)) and prayers.
And if you want my number - maybe we can encourage each other on the low points.
Love
MArianne
HI, My husband was dxed in feb. with sclc. He had radiation and chemo, then total remission, so they recommended wbr, did 15 rounds. Did real well, still clear. He is tired alot, but rests as needed, works fulltime and goes in novermber for ct scan, we hope for the best. You'll do fine. but it is scary, seems we live and breath it everyday. Good luck. Pat
Depression is somewhat normal, as long as you recognise what it is and not allow it to get you down. We all have a pity party once in a while. I can't say get over it, that is in your hands, just know why you feel that way and get some help if needed.
I actually don't know what WBR means as radiation or surgery was not possible in my diagnosis of Stage 3III-4 Small Cell Lung Cancer back in Nov 2007. Primary was mediastinum, mets to lymph nodes and liver .
Chemo was my only choice besides refusing chemo treatment and going on Hospice. I elected to take the chemo, started mid-Nov on a three week rotation regime, of three days in a row every 21-28 days.
Cats Scans showed some shrinkage after 2 cycles, and also after the 6th cycycle, two more cycles were recommended and completed in latter part of May 2008. Etopcide and Carboplatin.
Within two weeks,I had a blood clot in my leg which put me in the hospital and had another CT Scan June 4, 2008 which was "good".
Had a two month reprieve from treatment,from then until one week before next Dr Visit Aug 11, 2008 for CT Scan, which came back with increased activitiy on the liver with necrosis in the center.
Additional chemo was recommended, different med, to be on a once a week schedule for three weeks and off a week. Week one Carboplatin and Campatar,
Week two and three Campatar only.
I am one of the fortunate ones that have not had a lot of side effects other than the loss of hair, poor appetite and fatique thoughout all of this.
I haven't any idea how this 2nd line treatment will turn out but I am still here and plan to stay a while. I can't imagine giving up now. It has been 11 months since DX found through my only symptom, a swollen lymph node in my neck.
Depression is somewhat normal, as long as you recognise what it is and not allow it to get you down. We all have a pity party once in a while. I can't say get over it, that is in your hands, just know why you feel that way and get some help if needed.
I actually don't know what WBR means as radiation or surgery was not possible in my diagnosis of Stage 3III-4 Small Cell Lung Cancer back in Nov 2007. Primary was mediastinum, mets to lymph node and liver .
Chemo was my only choice besides refusing chemo treatment and going on Hospice. I elected to take the chemo, started mid-Nov on a three week rotation regime, of three days in a row every 21-28 days.
Cats Scans showed some shrinkage after 2 cycles, and also after the 6th cycycle, two more cycles were recommended and completed in latter part of May 2008. Etopcide and Carboplatin.
Within two weeks,I had a blood clot in my leg which put me in the hospital and had another CT Scan June 4, 2008 which was "good".
Had a two month reprieve from treatment,from then until I week before next Dr Visit Aug 11, 2008 for CT Scan, which came back with increased activitiy on the liver with necrosis in the center.
Additional chemo was recommended, different med, to be on a once a week schedule for three weeks and off a week. Week one Carboplatin and Campatar,
Week two and three Campatar only.
I am one of the fortunate ones that have not had a lot of side effects other than the loss of hair, poor appetite and fatique thoughout all of this.
I haven't any idea how this 2nd line treatment will turn out but I am still here and plan to stay a while. I can't imagine giving up now. It has been 11 months since DX found through my only symptom, a swollen lymph node in my neck.
My husband was diagnosed in Nov. of 2007 with limited small cell, and has had 15 VERY LONG sessions of 2 different chemos, and 30 rounds of radiation, and has had a remarkably good pet/ct scan. Now he just needs some brain radiation as a precautionary measure to make sure none of the cancerous cells might even consider traveling to the brain. He has been extremely lucky, and we are forever grateful to the wonderful doctors and nurses who have treated him here, in New York.
Remember, every patient is different, and if you have the right medical teams and caregivers, you have to trust them and hope for the best. My prayers and thoughts go out to you for a wonderful future.
Phyllis
Thanks Phyliss, may I ask what chemo drugs he has had?
Julie
does anyone think that there is a survival difference with sclc and men vs. women? just curious
maria
Hi Julie. My husband had first had Cisplatin and Etopocide, and then the Etopocide was replaced with Irinotecan (generic name for Camptosar, or CPT11, for short). His first treatments were for 3 days in a row, and then 3 weeks later again, which was at the beginning of Dec. Then he began the second pair in Jan. and had 9 more treatments, but only once a week for 2 weeks in a row or less often, depending on his blood counts. Very often the platelets and white and red blood cells drop and need to be raised up again with injections, and then it delays the chemo treatments. He also had twice a day radiation in Dec. for a total of 30 treatments as well. Please ask me anything else you might want to know, since he's such a success story. The only big drawback was that the sessions lasted between 6 and 7 hours, and I kept him company for all but one session, when I myself was sick, with hydration before and after, but it seems like it was certainly worth it!!!!Lots of luck, and keep in touch,
Phyllis
I do have another ?. I had very much the same treatment but I'm wondering why they switched to Irinotecan. My onc talked briefly about this as a 2nd line treatment but from what I've read the studies don't show much success with SCLC.
Thanks
Oh and Maria I haven't read anything on the survival rate between men and women sorry.
Julie
My 74 y/o Dad was diagnosed in May of this year. He underwent 4 rounds of chemo and is now not showing any signs of the disease. His was extensive stage........in his liver and spine. I actually never thought he would get out of the hospital at one point. The first round of chemo ended up putting him in the cardiac care unit. I was positive the chemo would kill him faster than the cancer. He just went this week for another Chest Xray which was clear. He goes once a month for one of them, and a CT Scan every 3 months. Hes doing great. Looks better than he has in months.....years for that matter. I know you were wondering about long term survivors, but wanted to share my Dad's success with you. Theres ALWAYS hope!
Cindy
When the doctor suggested Irinotecan she said it was new and was supposedly very successful for my husband's type of disease. It must have worked well with the Cisplatin because there was no evidence of cancer anywhere in the latest pet scan on Aug. 11. We trusted her and had to go that route, and feel confident it did the job.
I believe it was a new chemo from Japan (what a surprise, "Made in Japan" has a whole new meaning to us now!)
Stay well, talk soon,
Phyllis
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