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Posted

Hello,I am new to this particular forum,my husband who is 44 was dx in June with SCLC and had 9 rounds of chemo(cisplatin&VP-16) and 39 radiation tx.

All went well with that then about a week ago he presented with facial "tics",we spoke to oncologist about this he ordered an MRI which he had done last friday,well we recieved the results today,my husband has multiple brain mets and they have started pallative radiation and only give my husband a six month survival! :cry: I am just in shock as my husband was doing so well after the inital tx!!! :shock:

I would love to hear from other people dealing with this disease or the caregiver to someone with SCLC

Karen44

Posted

Welcome to the group. I did not have SCLC but many here have I am sure they have good info and support for you. I did have those chemo drugs. Donna G

Posted

Welcome to our support family.I don't have sclc either but have been given the 3 months to live prognosis so many times it is really getting old.

There will be others to post with sclc that have dealt with this and how they treated the brain mets as well.

Posted

Hello, and welcome.

We will help our loving group support you and we want you to know that we care.

Brian has NSCLC, but his tumor has neuroendocrine features so it acts a lot like SCLC. He had the same chemo for his first regimen. We are fighting his mets to his liver right now.

We are sorry for your news, but hope to share w/ you that those time frames that they give you are just guesses based on very old data sometimes.

We are praying that your husband proves their math to be incorrect.

Best,

Pat and Brian

Posted

Karen welcome to the board! So sorry you and your husband have to go through this. My mom had SCLC but did not have brain mets. There are several here who have beaten the odds. I will keep you and your husband in my prayers.

Posted

Glad you found the sight.

As for the '6 months'!!! Someone has been reading old expected outcomes!! I was diag. in Feb 2001 with sclc with several mets (read the profile below), I was told 'you have 6 months without treatment and 1 1/2 yrs if you do treatment'. WELL I am still here. I did have a relapse in 2003 and was treated.

Please know there are some who respond well to treatment. Granted mine has not spread to the brain and I am sure that is scary.

Hang in there and if it was your oncologist who said 6 months get a second opinion. Nobody knows how long we have!

Cindy

Posted

Karen, although I am so very sorry that you have a reason to be here, I want to welcome you to this board. There are so many warm and compassionate people here that will always be ready to help! Some have information and experience with a specific topic, while others offer lots of hugs, prayers and broad shoulders. Our Cindy is a definite reason never to believe statistics. As she said, if your current oncologist is willing to "give up" and give your husband a time line, then maybe you should find a doctor that will be a bit more optomistic and aggressive. I lost my husband to sclc almost three years ago. In those three years, I have read of so many new and promising treatments available for sc patients. I will be keeping you and your husband in my prayers. Please feel free to PM me if you'd ever like to talk.

Posted

Karen, this forum is a great place to find out information, common experiences and lots of encourgement and hope. So thankful you two have found us. Your hubby will be in my prayers. pammie

Posted

Hi, Karen.

My mom was dx with 3 brain mets - the largest 2 were about the size of a ping-pong ball - in early March. She had WBR, which eliminated the symptoms, survived near-fatal anemia, and had gamma knife in October for regrowth.

She is now nearing the end of her journey. Hospice nurses feel she will not see Christmas. However, that's 9 months from dx with HUGE brain mets.

You really can't know how long your husband will have. It could be a year or more. I read one account of a lady surviving 15 YEARS after dx with brain mets.

My advice? Do the WBR and try to solve your "end-of-life" questions (will, durable power of attorney, etc). Then forget it. Live each day for the joy of the day. Do the things you really want to do. Eat dessert first. Be frivolous. Laugh at everything. That way, even if your husband gets another 15 years, you'll know you made the most of this uncertain time.

Posted

I want to thank everyone who responded to my posts,this seems like the BOARD to post on!!

My husband wants to fight this cancer he doesn't want it to win!!

We know the odds are not in his favor, he will be in for the fight of his life!!

Please pray for him

God Bless

Karen1961

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