Does anyone have Ext SCLC with brain mets and live?

[thrashej]

I read these posts and hear the wonderful stories of miracles but I wonder how God decides who stays and who goes.??

My father...SCLC with mets to pancreas and 4 lesions on brain....there was really no hope for him from the beginning and the chemo never really worked. He is 60 yrs and was in good health otherwise..?? But I read stories on here of even extensive SCLC going away to NED...so it DOES HAPPEN?? What do you think the odds of someone like my Dad going NED? Less than 1%?

I don't know why I ask this, because obviously he is NOT in that small percentage. The cancer continued to grow everywhere in him despite and throughout chemo.

What are your thoughts??

[Carleen]

Hi Janice,

I think there is always room for hope. You are right in that only God can decide who stays and who goes. How he decides that is a complete mystery. I've tried to find sense in it, but can't.

My husband was diagnosed over 3 years ago, and from diagnosis was stage IV with mets to lymph nodes and liver. Since then he has had progression to the pancreas and brain, for over a year now he has been living with these mets. Recently he's had progression to his spine and thyroid, and still he is choosing to live and have hope for living.

He once told me that if he were to start to think and believe he was sure to die, then he couldn't go on. He would be consumed by fear and grief and would shut down. I think hope is the best defense mechanism that God gives us.

Now, my husband does not have SCLC, but Atypical carcinoid which is aggressive like SCLC but non-responsive to chemo. He too has had chemo that has never worked. He has had LOTS of progression and growth. The chances of going NED may be next to nothing, but their is still hope that things can be gotten under control and kept stable. There are cases where cancer has just slowed progression with no rhyme or reason. And it is possible to live with these mets for a long time to come.

It is all up to God, and all up to your dad.

Saying prayers for you and dad.

[ztweb]

We don't know God's plan before we find out about this horrendous disease, and we don't know his plans after! Keep your faith...I don't know about the statistics, but I can tell you that every day I pray for miracles for my family, and for the innumerable other families out there suffering from this beast. God bless you and I will pray for your dad.

[dchurchi]

I will share my husband's story.

Alan was Dx extensive SCLC in Jan 05. Chemo itselt almost killed him in March of 05 and was discontinued.

In july 05 a large brain met was discoved and was crushing his brain stem and at that point Alan's Dr.s were very concerned he would not make it a couple of months so Alan had aggressive brain radiation.

Well it is now May 06 and Alan is doing remarkabley well. Although Alan is not NED (some lung tumor and lymph nodes still remain) the brain tumor is completely gone and the rest of his cancer is stable.

Alan and I have decided to take life one single day at at time and I will admit, we are having the time of our lives.

so my advice live and enjoy life everyday. I hope our story has given you a little hope.

[KatieB]

Lots of good replies here.

I personally don't think God chooses who stays or who goes at all, and yes, I do believe in God.

I think it is very much about opportunity, how informed someone may be to treatment options, how responsive someone is to their treatments biologically. Some people respond wondderfully to treatment while other peoples bodies do not respond to treatment at all. Some people begin their LC journey in poor health, while others are strong and otherwise "healthy" at diagnosis. Age also plays a factor as well as location...Someone who doesn't have access to a comprehensive cancer center, or a lung cancer specialist, or even an oncologist and surgeon who is up to date on the latest lung cancer treatments, clinical trials and procedures will not have as much of an advantage as someone who does.

My dad was originally dx. with extensive sclc with 2 tiny mets to his liver. He did not survive. There are others who have had much more extensive disease, who have been successful in treating this cancer as a chronic disease for years, and still others who are in complete remission for years!

Do I think God chose them over my dad? No way. My dad was a great man. Do I believe God "needed" my dad so he took him? NO WAY, there are much better candidates for that job if God needed someone at his side! LOL

I simply believe that his body did not respond to chemotherapy. I believe that we could not find a treatment that was successful -faster than his cancer grew.

There is ALWAYS hope. If you ask any survivor, I am sure they will say that there was a time in their disease that they thought they wouldn't survive....but they did, and your dad might too.

Keep us posted. Sending lots of positive thoughts to your family.

[hollyanne]

Hi -

I believe that God has a plan and while on earth we will never understand it. It took my mom, while she was sick to convince me of this -- people would say "Why Nancy, she is the most caring, generous person...and such a Chistian????" Yet, none of us know who, why and when. I do believe that some amazing things have come from my mom's journey -- I am so close to my dad, I have made so many fantastic friendships with my mom's close friends, my faith is stronger than ever, I have learned to live each day, etc.

Was her diagnosis, treatmenet and death the most painful and horrendous thing I could ever experience? Yes? Do I feel terrible that my baby will never know her? Yes, absolutely. But, I feel that it is not for us to try and figure out why. It is funny my mom taught me to pray for acceptance of God's will..and that is my prayer every night.

I know you are struggling right now....thinking of you and your dad. It simply sucks.

Holly

[kdgmom6]

flying to Aruba on Saturday! She was diagnosed 7 mths ago. She has had whole brain radiation, fought a 4 wk battle with phnemonia (24 hr antibotics via port) and has multi brain mets. The whole thing sucks. She had finished her 4th round of chemo last week. She has overcome loss of use on with her left arm, and loss of use with her right leg. Both are working pretty good right now. We have opted to try to take a trip per month. For now all is going well. I don't have an answer for you but please, please all of you live for the moment we don't know what the future holds. Get out when you can with your loved one and enjoy the time you have left.

My thoughts and prayers are with you,

Julie

[mjb]

I know how hard this is - please hang in there. I don't know what your father's odds are but I can tell you that the doctors are amazed at my husbands case - and I think you'll find other people who say the same thing. Can it happen? Absolutely! My husband has refused to give in to this, just takes the attitude that he's going to beat it. Lung, adrenal, mets to the brain. Chemo, radiation, stereotactic brain surgery, two brain surgeries under the knife. He's still walking and talking, joking and working puzzles. And we're thankful for every single day. It could change tomorrow and he could lose the battle. None of us know what is going to happen - to our loved ones or ourselves - so all we can do is be grateful for each day we have. Maybe the one thing this awful disease teaches us is how to appreciate life. That doesn't mean we don't sometimes despair and think how unfair it is so it's okay to come here and vent as well. Wish I knew all the answers.

[thrashej]

You know, I don't really know what happened with my Dad then. He was dx...sclc with mets to pancreas and brain (4 lesions). Dr said options were chemo and WBR to shrink tumors only. Chemo worked on all other tumors but this "super" tumor began growing in the opposite lung despite the chemo. We tried a different chemo...it continued to grow. After that, and the brain radiation, the Dr's told him that there was nothing more they could do and released him to hospice care.

Why do you think he wasn't told to "go under the knife" (gammaknife for brain?) I wonder.?? Any ideas???

[mjb]

It's my understanding they don't like to use the stereotactic or gamma knife if there are several brain tumors. They would start with WBR, then possibly do it if one or two were still growing (as in my husband's case). Looks like they maybe would have done radiation to the tumor in the lung, though. Did they discuss that? Have you considered getting a second opinion? Our oncologist went to bat when one doctor didn't want to treat and got us an appointment with another one.

Having said all that, I think it's also important to remember that any of us could hit by a car or have a plane drop on us tomorrow. We can't see the really big picture and understand why these things happen. So while pursuing every option, do treasure each day along the way. God be with you.

[thrashej]

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels.

I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people.

Janice

[thrashej]

I wanted to add that I think they never did lung radiation because the tumor was not in his lung but on the outside of his lung. They did do WBR and those tumors did shrink. But after one round of chemo, another "super tumor" grew in his other lung and I think after he got so sick (needed a blood transfusion) after 2nd round chemo that they thought he wasn't in good enough condition to continue. Plus, the tumor grew even larger after 2nd round chemo. So, it was chemo resistant. Lung radiation would not have baught him too much time I don't think and maybe they wanted him to be as comfortable as possible in his last few weeks/months.

Oh well. I can't guess at what should have been done. I know I have to get the rest of my family to quit smoking and I know now that if anyone else I love gets dx with any type of cancer, that I will seek a second opinion. My Dad wouldn't have ran around to a million docs anyway. Plus, he didn't have much financially. Thank goodness for insurance!

Thanks all!

[Darrell]

I am terribly sorry to hear about your Dad. Just know that I for one, am thinking of you. There are many others here who have been through what you are going through and understand.

[KatieB]

Oh Janice,

I'm so sorry about your dad.

Please accept my condolences.

[Wendy]

My sincere sympathy to you and your family on the loss of your dad.

Wendy

[penny38]

Hello there and sorry to hear the bad news well my sister JCAWORK made me promise her I would tell it like it is since she is not here. She said everyone is going to say keep the hope and god will watch well you are right less then 1 percent will live my sister brain mets were gone and 5 days later she passed away. I am so sad it hurts but she lived everyday as if it was her last and she put things in order and it made life alot easier in the end and dont lie to your dad because he needs to know what you think . We are not doctors but my sisters doctors said nobody know you like your family so they will really be the one to know when it is time. or at lease better then he could and he was right I knew when it was time for her to go. So i say you spend all the time you can take pictures and record his voice because I wish I had done more of that. I will be thinking of you and your dad. Please fell free to PM me any time and I am keep hope for everyone.