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I have seen people post about 8 or 10 years survival with sclc. Here is my question: is that limited sclc or ext sclc? Also, did they have surgery?
I don't mean to split hairs, but need a little lift today. My husband has ext sclc, mets to bone and liver, all non operable.
Thanks in advance.
Marg-
Ext. SCLC here. Diagnosed 11/06. Large tumor in the mediastinum area, some lymph nodes and adrenal gland. Chemo for 8 months, I lost how many cycles.
Had radiation to the chest with chemo to start, then PCI to the brain. I have been NED since 08/07. I am pretty happy with that! I have heard of the really long time survivors and praying for that. SCLC patients normally do not have surgery. I hope things go well for your husband.Treatment was rough for me but I got used to it as time went on. Some do not have many side effects at all. I worked full time through most of the treatment. Just take one day at a time.
Hi there,
I was dx in March of 06 with Lt.SCLC, had 6 rounds of Chemo, with 6 weeks of Chest Radiation going on the same time, then 6 weeks off. After that I had 15 low dose PCI treatments and all has been well since and I feel so very blessed to be here.
Take one day at a time and I do hope that this will give hope.
God bless you
Kerstin
hey, Marg,
I've done a lot of reading about SCLC - one of the common threads is that by the time it is discovered, it's been around for a while. Some studies give 7-10 years as the average age of discovery. Some studies 1-3. I've given this some thought....that would mean your sweetie is already a long term survivor.
While we're thinking, let's think a little bit more...with SCLC, it's generally the management of side effects from all the treatments that is a large key to success....maybe that might be helpful in how your approach your husband's care (and feeding).
wishing you both scads more years together....
love and hugs
Pat
Well for those that I know, 3 of them are extensive and 2 of them are limited. These are people I know! There are others on the Lungevity Board too who are SCLC survivors of 5 + years as well and are EX survivors.
None of my friends had or have had surgery. Cara Kennedy had surgery for Small Cell and that was 6 years ago and she's doing just fine today. (Ted Kennedy's daughter).
My friends had chemo and radiation. Two of them had there cancer spread to the liver and they did chemo and poof it's gone. They are still cancer free. One is a 9 year survivor and is 73 years old and the other is a 4 year survivor and is 58 years old.
This is some scary stuff, no doubt about it. I knew of a lady who USE to be a Phone buddy for ALCASE (LCA) long time ago that was a 14 year SCLC Survivor EX. She won an award from ALCASE called (Moments that Matter) that I presented to her here in Minnesota her name was Lois. I lost touch with her, but back then in 1999 she was a 14 year survivor and cancer free. She was in her late 60's.
Best wishes,
Connie
Hello dear friend ~
Remember that while we often go into search mode...wanting to know....that ultimately we do not know the time or day appointed to each of us on our return to our wonderful Papa God. REst assured that THAT day was written in the book of life....and God knows the day. I know how you feel though....it is difficult at times to walk in this blind faith....pushing down our personal desires "to know"....know you are not alone...we are all here....we care...we carry you with us. But more importantly GOD KNOWS!! He knows your feelings, thoughts, fears and knows just how to fix them all. When I get into this funk...I try to remember all I have seen God do in the past to remind myself that he can do it again.....I hope you are having a better day!!!
I pray peace for you....You will guard him and keep him in perfect and constant peace whose mind [both its inclination and its character] is stayed on You, because he commits himself to You, leans on You, and hopes confidently in You.
Isaiah 26: 3
and hope....But I will hope continually, and will praise You yet more and more. Psalm 71: 14
strength ....God is our Refuge and Strength [mighty and impenetrable to temptation], a very present and well-proved help in trouble.
Psalm 46: 1
a double dose...He gives power to the faint and weary, and to him who has no might He increases strength [causing it to multiply and making it to abound]. Isaiah 40: 29
Rest sister....
Thanks everyone. I just needed to know someone somewhere had made it at least 3 or 4 years. What's behind this all is that our son has just gotten engaged and his fiance is insisting that she must finish college before the wedding, no matter what happens with Mike. She is scheduled to graduate May of 2010. That seems a very long time away.
Really, Mike is doing great, and I'm silly to try to own that worry, of how long this life will be!
Why not look into alternative that may save his life? I did when conventional treatment failed me.
Almost 2 years now on Low dose naltrexone which is keeping me alive after I was told "get my affairs in order" .
* Low dose Naltrexone
http://www.lowdosenaltrexone.org/
http://www.lowdosenaltrexone.org/ldn_and_cancer.htm
There is yahoo group which members with cancer take LDN and discuss our issues.
http://health.groups.yahoo.com/group/LDN_4_cancer/
Dee
http://www.ldn4cancer.com
My husband was diagnosed in June 2005 with limited small cell, so far he has had six clear scans and is doing OK. Life isn't the same but we have found our new normal and whilst we don't have a 10 year plan we do look to the middle-term future with optimism and some degree of security. Dr West (from OncTalk) answered a question about the recurrence of small cell by saying that if it hadn't returned within 2 years he was 90% certain it wouldn't. That's good enough for us. Stay positive and enjoy the moment.
regards
Lynn
Hi, My husband has limited sclc. He had his chemo and radiation, also pci. DX in feb 08. He's in remission, has his next scan 11/12. We hope and pray everyday. Good luck to you! Pat
Dear Dee (gemhk)
First off after reading your profile I see you had/have cervical cancer that has spread to the lung. Please note this is NOT at ALL the same as having lung cancer and it NOT treated the same.
We ALWAYS encourage members to check with there Onc Doc's before stating ANY kind of Alternative methods of treatments, first and foremost. Many doc's are very willing to do alternative treatments with lung cancer patients, but they need to know about them up front first. So PLEASE PAT don't do something without running it by your hubbies doctor.
Best to be safe rather then sorry.
I've been living with lung cancer since I was 17 and I am now 56. I don't claim by no means to know all there is to know, but I do know you always keep your Onc Doc in tune of what is going on and what changes you may wish to make.
My advice to you right now is, try and learn to live ONE DAY AT A TIME. It only makes things easier at this time. Not to say you can't have long range plans, but it's best to shorten them up for now. Today is a GIFT, YESTERDAY IS HISTORY, TOMORROW NEVER COMES!! BABY STEPS is what we all take as we start this journey. You'll get through it and we'll help you.
Hugs,
Connie
Warm Regards,
Connie
P.S. Sorry I didn't mean to call you PAT (MARG) Sigh!!
DX'd with limited SCLC in Jan 08 - 30 radiation shots to the chest then 15 PC treatments. In June 2008, got the all clear NED. Then in August, it came back ex SCLC to the Spine C7 and to the liver. Started chemo again, third treatment the my last scans indicated reduction of all mets by 50% and spine is clear. Question has anyone beat the liver mets completely ?
Thanks for your encouraging words. A family member has SCLC and finished chemo and radiation. They are now going to do PCI and then 3 more months of radiation. The main tumor in the sternum area shrunk some but they want it to shrink more. Any hope you could provide would be great.
Thanks
Hi,
My dad was diagnosed w/ ex-sclc about 3 weeks ago and has already completed his 2nd round of chemo. My sisters and I are desperate to find something else, in addition to help him. He has also been researching different vitamins and supplements to help. I thoroughly checked out the links you sent and am interested in finding out more information. First, how did you get your doctor to agree to try LDN. My father goes to the VA for all his medical needs. His doctors do seem good (considering) but I don't know if they will stray from the traditional path.
Any advise would be greatly appreciated!
Thank you for inspiring and sending all this helpful, non-traditional information.
Warm regards,
Tammy
I HAVE NSCLC 3B DX-LATE 2002 --HAD RADIATION - 2 DIFFERENT ROUNDS OF CHEMO TWICE -- A YEAR APART ( NOT SURE IF 2ND ROUNDS WERE FOR -HIGH TUMOR MARKERS- OR WHAT) HAD BOTH HIPS REPLACED DUE TO TREATMENT AND NOW I AM COUGHING A LOT -GOING TO SEE MY LUNG DR THIS WEEK-- DON'T KNOW A LOT ABOUT CANCER TERMS ---WHEN I START TO READ STUFF ON INTERNET MAKES ME THINK THE LESS I KNOW THE BETTER--HOPE EVERYBODY ==AT LEAST GETS 5 YEARS --BUT DON'T PISS THE DAYS AWAY ==AS TIM McGRAW SINGS LIVE FOR THE MOMENT
GOOD LUCK AND GOD BLESS TO ALL
CeeAnne,
I believe that PCI is Preventitive Cranial Irradation. Why it isn't PCR (prevetitive cranial radiation), I don't know! I also don't know the difference between PCI and WBR. I think I probably use the terms interchangably, probably mistakenly.
Thanks, Marg. Today we had an appt with the radiologist to discuss brain radiation for my husband (preventative, we'll begin Monday), and I was wondering. I'm trying to absorb as much as possible. It does look scary. He's young, 52, so I certainly hope that helps a bit. He's a bit concerned about memory loss but like he says, he's "lost it" already.
PCI is Prophylactic Cranial Irradiation.
Prophylactic because it is trying to destroy any tumour cells which might be lurking, but not yet developed into larger tumours;
Cranial because it is directed at the brain;
Irradiation because the Xrays are directed into the brain.
If it was cranial radiation, then the brain would be producing the Xrays. Just semantics really, but that's why it is PCI.
WBR (whole brain radiotherapy) is used to treat tumours already there, but given to the whole of the brain, so it has some prophylactic effect as well. The alternative is stereotactic radiotherapy (Cyberknife etc.), where radiation is directed at the section of the brain containing the tumour(s).
I find understanding exactly what is going on in the treatment helps. If only I could understand exactly what is going on with the disease.
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