SCLC Survivors and Remission People, I need to hear from you

[ztweb]

Dad had limited stage - no mets anywhere. Does he have a better chance with his remission going to cure in five years, because he hadn't had mets prior to remission status?

With SCLC recurrence, what treatments are available?

With SCLC remission, is there anything that dad should be doing?

Is it really palliative care if it comes back, or is there hope?

Do docs REALLY believe that it WILL come back?

Thanks!!!! Stuck between a rock and a hard place.

Jen

[Kasey]

Aw (((Jen))),

I know little about SCLC, but I know LOTS about stress and all the 'what if's'!!!! Please try to let go of some of those stressers and give yourself a break. Remain vigilant and a strong advocate for your Dad, but try to lead your life also. Hopefully some experts may come along with answers to your questions, BUT............I too have the same type questions about my own NSCLC. I just returned with another GOOD report. So I gotta just go with that for now, ya know? I'll be looking for the replies here.......may get some tips for myself!

Take some deep breaths!

Kasey

[cindi o'h]

I get it.

The lc treatment is all life encompassing.

The treatment stops.

Now what?

We have been so used to doing "Something". Now we are doing nothing while we wait for the next scan.

This is a tough time for so many of us, Jen.

We feel like we aren't doing anything and want to be prepared for The something that may be lurking just around the corner.

Truth be told, you all have done it all.

Now, it's time to put efforts into letting go, and letting God.

Put efforts into Living well. Good diet. All the colorful fruits and vegetables; are they on the plate? Cabbage family? Are they there? Walking, sunshine, lakes, streams and forests, are they what give you and your family joy?

Trying to find your way back to trying to find purpose and meaning in daily living, and trying to keep the next scan on the calendar written in small letters instead of bold letters is a challenge for the toughest among us.

Best to all of you.

Cindi o'h

[Sheri]

Jen, I'm with you. I know the anxiety you are feeling. I'm now on Lexapro and Xanax.

Males tend to relapse with SCLC more than females. As you may have noticed, the SCLC survivors on this site are women. Don is the exception, I hope he contributes to this thread and tells us he is still thriving.

What I have learned is the longer the remission, the better chance of survival. My Dad was NED for fifteen months before his recurrance. He's now on second line treatment and yes they classify it as palliative but I hope he dances with NED again.

I talk to my Dad daily, I stay at his house on the weekends but I haven't cried for my hero since I began meds. Because SCLC is of the minority, little has been done in the past twenty years to progress effective treatment.

Take care of yourself. Your Dad needs you. Through my profile, I'll keep everyone updated on my Dad's situation.

[Cindy RN]

The time after treatment is as stressful as treatment time.

Mine was extensive and found in 2/2001 remission during 2002, relapsed in 2003 but only 1 place this time.

Aug 2003 last treatment and I am still in remission.

There is always hope-I just live between scans and keep on going-

Good luck,

Cindy

[Geri]

Hi Jen, let me tell you what I was told....go home and enjoy life!

I was limited sclc, chose not to have PCI, had no sign of tumor before I finished treatment, after 2 years I started 6 month check-ups.

At this point I felt that I'd been cut adrift in the middle of the river with one oar. I was worried that "something" might be in "there" growing and by the time I had another scan it would have taken over. As you know I'm still here almost 5 years later and the concerns are still there in a minute form at the back of my brain. This is normal.

The concerns never go away, they lessen over time and it's easier to put cancer aside. What's important is not to borrow trouble (Don Wood's saying not mine) or you'll make yourself nuts.

I was told that after 3 years any cancer that appeared would be considered a new one - not a recurrence - and as such is easier to treat. I have been pronounced cured of my previous cancer and now have to have yearly check ups with a CT scan, I'm still at high risk but I can live with that.

I don't know of any additional survival tricks to get from remission to cure other than healthy living, all the things we should already be doing - you know, good diet, exercise - all the usual stuff.

I don't know about pallitive tx only for recurrence or what the tx is in that case, I don't worry about that.........if and when it comes back I'll treat it the same as the last one - one day at a time with whatever is available to knock it on the head.

I know it's hard to put all the cancer stuff aside, it's been a huge part of your life for a while now but you have to move on. Enjoy the fact that Dad is in remission and be kind to yourself, put all these worries on the high shelf - keeping them in the foreground is not going to affect the outcome but it will give you lots of sleepness nights.

Your worries and concerns are perfectly normal, try not to let them take over your life.

That's the end of my loooong lecture for today!!

Take care

Geri

[dchurchi]

Jen,

as you read Alan's history you can see he did not have the easiest time his 1st year of DX. The worst was when the brain met was found. Although his radiation oncologist treated Alan very aggressively, privately he did not hold much hope. it was that bad. Well that was well over a year ago. You just can not predict when/if the cancer will come back. After Alan's brain met I think we were all (DRS included) sure the cancer would have been back by now and to date every scan has been good. Alan and I do our very best to just live, live, live. We call it "our bounus time" as we both know how bad it was and yes how bad it "could" get again. So we are having the time of our lives right now. So if you can just let it go.

[Welthy]

Beautifully said Cindi'oh!

[Don]

Hello All. Just had another checkup PET and MRI and all is still clear. Almost 4 years now. Now to answer Jens questions. What treatment will they use IF it comes back. 1. The newest one available because we believe it wont be back for years if ever.

2. Is there anything Dad should be doing. Yes, having a big old time doing whatever he wants. 3. Who cares what doctors say, if we leave it up to them we would have died along time ago. 4. What do we eat. I eat whatever I feel like and I enjoy every bite. I remember when I went 4 months on liquids only. I will eat whatever I feel like. 5.

Will it come back. No doctor, lawyer or indian chief can answer that question. Truth of the matter lung cancer patients live longer today than ever before.

In closing, the next time you talk with a doctor that has that attitude tell them to kiss my butt. As long as he is getting paid by insurance he better do his job and keep me alive so he can pay his or her bills or was it alimony LOL.

With that said,

God Bless

Don

[mitzu]

Jen,

Don is right. CindyRN is right. I echo their words.

I remember having your questions in my head constantly, a few years ago. I'm still asking myself, could I have done anything differently for my Dad?

God only knows. There is no cure, however there is NED. KatieB will tell you that also.

Your Dad should enjoy life as much as he can, and you should let him know how much you love him, everyday. You are a caring daughter, and I hope you get some peace of mind. I know how hard it is.

I hope your Dad and NED become best friends.

[Connie B]

hummm What if, What if, What If, What if?!?!?! The what if's never really go away, but they do get to where they don't totally control your life every minute of the day.

This disease also has to be treated ONE DAY AT T TIME, and even sometimes ONE MINUTE AT A TIME!

Having said that, I will also share a story with you about a lady I met 4 years aga at one of our Lung Cancer Awareness Events at our State Capital that a bunch of us Lung Cancer Survivors put together.

I was sitting listening to one of our guest speakers when this lady, (Mary) came over to me and said, "Are you Connie?" I said, Yes! She said, I had to meet you because I wanted to share with you how excited I am to be here (in more ways then one). She went on to say,

"I am a Small Cell Lung Cancer Survivor and I have had my cancer come back on me 8 times in the last 9 years. Her first Year and a half was Cancer Free and then Boom, the other shoe dropped.

Mary was SO GRATEFUL to be alive and she said, her treatments where going well for her. She was SO HOPEFUL, GRATEFUL, SUPPORTIVE AND CARING AND LOVING, and the best part was she was TOTALY ENJOYING HER LIFE, One Day at A Time! She refused to sit around and wait to die. She gave me some of that MOXIE! Mary is my Hero!

Sitting around either being a Caregiver or The Patient and thinking, "when will the next shoe drop and what will we do then?" will only slow you down from totally enjoying life, with you, your family, and your dad. And all that worry does show through to the Cancer Survivor. (not to mentions some parents are very good at reading there young adult children.)

If dad is Cancer Free today, then GOD BLESS HIM and GO WITH IT! None of us can sit around and wonder and worry about the What if's because they will only drive you nuts. What if we get bombed, what if a plane falls in our house, what if you choke on food??? What if you just let it go and let God and enjoy today? You can't worry about what you don't know just yet. What if dad lives cancer free for the next 10 to 15 years? It could very well happen.

I use to do the "Cancer what?" thingy and it worked in time to come to clear my head of worry and of controlling my every throught and live style.

Good luck and go enjoy! IF dad's cancer comes back, they will deal with it THEN and not before!