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sclc- any long term survivors out there

gregw
Posts: 6
Joined: Sep 2009

I am nearing two years since no sclc on scans. Are there any long term survivors out there from small cell. If so please respond, I have not found any three year plus survivors. Thank you in advance for your time.

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cobra1122
Posts: 244
Joined: Jul 2009

gregw
Well, I am sure there are many, I myself have SCLC in my left lung. I have NSCLC in my right and both have mets to other regions of the body.( bone, brain, and some organs).
I am on Hospice, been since Jan 09 but I am still plugging along. If you read my bio you will see I have a complicated health issue, so I am a rarity that I am still here and that I have so many issues all at the same time.
But I have found that a positive attitude and support system makes a great deal of difference. I cant waste time on what ifs and whys, nor can I waste it on the negatives or what the future may or may not hold. I can only live today today, tomorrow will been here soon enough. My wife, children, and grandchildren have also learned that we cant live tomorrow today, so we create memories for today, enjoy whatever time we have together.
I am glad to hear that you are still going and hopefully plan to. Dont try to figure out how long you have, I have outlived every diagnosis that I have been given, so you can keep going till its time, then you will rest and go to a better place. But right now focus on today and enjoying it, you dont need to drive yourself crazy trying to figure out the future. There are many survivors that have/ are still going strong, many on this sight, so be one of them, keep the light in your eyes going. I realize its hard, but life in general is hard, just make the best of what you have and create memories with your family and friends.....

Our Prayers and Best Wishes to You and your Family,

Dan and Margi Harmon

pkaz53
Posts: 84
Joined: Nov 2005

gregw I am a 6 year survivor of small cell lung cancer did 4 rounds of chemo (cisplatin and etoposide )in combination with radiation to chest twice daily then did preventive radiation to the brain.
I recently attended a lung cancer seminar in Phila Pa presented by Penn Medicine the University of Penna. Abranson Cancer Center. I met with and talked to a 15 year survivor of sclc and met several others beyond 3 years so we're out there.
Good luck to you, don't ever give up,stay strong both physically and mentally keep your faith, remember prayer is strong, trust your Doctors and Nurses for they are the pathfinders on your journey with cancer, be well.

gregw
Posts: 6
Joined: Sep 2009

Thank You for your response and you are an inspiration. 6 years is nice to hear from. Did you ever have relapse in the 6 years? what side effects from treatment? I did same treatment as you and my scariest is I get a scintallating scotoma (vision disturbance)periodically. What is your age, I am 48. My faith is strong.

The toughest thing I have is the fear and its effect on my family but I am working hard at it.

Thanks for your response. I had not been on this site in a few weeks and it was great to hear from a survivor finally.

pkaz53
Posts: 84
Joined: Nov 2005

I have not had a reoccurence of sclc,my age is 56 -I have side effects from the chemo and pci ---diminished hearing,fatigue,sleep disorder,light sensitivity,chemo brain,joint pain,scintallating scotoma--I at first had some anger and frustration issues.

The fear of cancer returning is always there and you have to accecpt it for what it is we are not the same as we were before our journey with cancer, chemo and radiation changed some of that but the options are unacceptable.

Greg you are an inspiration to me, I walked in your shoes, 2 years out is a significant achievement keep fighting-take each day as it comes,keep your faith and your family and friends close.

To those on this site all my hopes and prayers are with you --

Be Well, Paul

gregw
Posts: 6
Joined: Sep 2009

Everyone thank you for your responses. Pkaz53, your response has been reassuring especially the side effects (scotoma) which scare me. Paul, Your suvival is inspiring to me. I am actually crying to know someone else is experiencing the side effects you have (all are identical to mine and our treatments were identical). I am less scared by you having shared this with me. Thank you Thank you.

You are all in my prayers

pkaz53
Posts: 84
Joined: Nov 2005

gregw I want to wish you and your family the best for this holiday season you are in my thoughts and prayers --- Keep on, keeping on!
I will be doing some evaluations in Janurary for the scotoma and testing for cognitive brain dysfunction(chemo brain) in February --There is one other thing, its weird, I have not been on this site in 2 years as you can see from very few posts and my join date 05. I kept a lot of the things I was going through to myself(survivors guilt) why me --I came out of my shell this past October when I attended the lung cancer seminar in Philadelphia. I came on this site after 2 yrs, in November, and found your post it's like I heard you calling out, it's hard to explain it but I want to thank you for helping me heal.

Take care -stay in touch -Paul

gregw
Posts: 6
Joined: Sep 2009

Paul

Thank you and happy holidays to you and your family. I cannot tell you how good you have made me feel. knowing a 6 year survivor gives me confidence. Sharing your side effects which are the same as mine and we had same treatment makes me less scared. FYI I have seen a Neurologist at Mayo clinic on my scintallating scotoma and he told me no worries as far as tumor etc. Mine are beginning to be less severe since I took up jogging again (now up to 2.5-3 mile a day)

These posts were my first ever and I think God had a hand in leading me to this site. Keep me updated on your status. I have pet scan on Jan 4. You are in my prayers and keep fighting the battle and the fear.

Greg

scrunch
Posts: 2
Joined: Feb 2006

HELLO
My husband is a 5 year SCLC stage IV with mets to brain at diagnosis. He has endured 3 brain surgeries, a lung surgery, chemo, whole brain radiation, radiation to lung and was recently diagnosed with prostate cancer as well. So yes the long term survivors are out here!!! My thoughts and prayers are with you. Keep the faith and stay strong!!!

nanaof7
Posts: 127
Joined: Feb 2009

I was dx in feb 09 had some chemo and radiation then surgery , I am supprised that my dr say they only do test every 3 months for my peace of mind because if it mets there is nothing they can do i find that strange and very depressing, it seems if it comes back somewhere else they could use radiation or chemo to or surgery to get rid of that too what is your opinions, or experience

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