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Guest Guy C

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Hello my name is Guy.

I am here for support as my fiancee Debbie has SCLC. She was diagnosed back in late March. The desease was extended to the pancreous region and adrenal gland. She also had brain mets. She first went for 10 treatments of WBR and then completed a 6 round regimin of Etoposide & Carboplatin. Upon completion her head was clear and everything else had significantly shrunk. This was in early-middle August.

About two to three weeks later she was back because a lypmph node popped out on her collar bone. The oncologist waited and checked her 3 weeks later and because it hadnt grown chose to wait again. He said he wanted to giver her body a rest and so forth. It appears it reacurred or the previous regimin didnt do as good as we had hoped. This is very discoraging to her and myself as well. She goes back Monday for further evaluation and as it seems the node has grown some and she will have to go for further chemo using Topotecan.

I am having a real diffucult time with this as with SCLC, a re-acurrance is never a good thing. She is terrified and having a tuff time dealing with all of this. We have a 2 year old as well as two other children living with us and its hearbreaking. Does anyone know how well the Topotecan works? She seemed to respond to the 1rst chemo drugs well except for the node.

I also found a couple of clinical trials at Dana Ferber that she could go for and we will be showing her oncologist these on Monday.

Thanks in advance

Guy

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Guy,

I'm very sorry about your finacee, ex SCLC is such a difficult cancer. As you can see by my husbands' profile, hes' been thru alot.

As for topotecan, my husband didn't have any good response to it. That is not to mean that Debbie wouldn't. I have found that everyone is different and responds differently.

As far as clinical trials go, in our situation, we haven't exhausted other options. But definitely discuss w/ her dr.

I also want to ask are they considerating Whole Brain Radiation ( WBR or PCI ) for preventative measures. SCLC is know to go to the brain, that is what happened in my husbands' case. But his first time w/ radiation he did well.

I also see that there are young children, so I know it is so so very difficult, I know Debbie must be exhausted. And probably depressed, including yourself. Please try to take advantage of the social worker at her hosp. to try to help both of you.

Please feel free to email/pm me any time......

Grace

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Hey Guy, Welcome

there are others' with more experience who can answer your questions. As far as Topotecan, it kept my dad stable for 5 months and other than fatigue he had little side effects from it.

There are options for your wife, which means there is always hope. We DO have sclc survivors here. You might want to check the SCLC forum. The moderators are survivors of 2-3+ years as well.

I'm sorry you had to find us, but this is the best place to be. We understand and will be here for you.

Keep posting and keep us posted on your wife-

Prayers for you both,

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Hello Guy and welcome,

So sorry you had reason to find a site like this but glad you have posted.

I am not able to offer much in the way of advice, but as Katie mentioned, please read through the other forums, especially the SCLC and SURVIVOR's. You can find a lot of great information as well as HOPE in those.

Please keep us posted and let us know how we can help you through this.

My thoughts and prayers are with you and Debbie and the children,

Chris

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Hi Guy,

I am so sorry for what you are going through. I feel your pain. I/we are going through a very similar situation with my dad. The pain I feel is sometimes unbearable, as I'm sure you know all too well.

I'm sorry I can't answer your question about the topotecan. You have come to the right place for answers and support. Everyone here is great.

Hang in there and never give up. I just told my dad yesterday, "This is going to be the fight of your life." We are going to do everything humanly possible to beat this thing.

Take care,

Diane

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I want to thank all of you who have welcomed me. Although Debbie seems ok at the present, I am terrified, as is she, of an uncertain future.

We still have too much to accomplish together and she will fight this thing. Her journey is my journey. Im right there with her.

Thanks

Guy

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Welcome, Guy! Sorry you and your fiancee have to go through this. My wife had a different type of LC, so I can't help you there. Determination to fight is a good thing in subduing the beast. Metastatic lung cancer gives a bleak prognosis, but there are people on here who have lived a lot longer than they were given. Don

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Guy,

Welcome to the site. There are a lot of clinical trials with new drugs that come out. Check them out and see what your oncologist thinks of them. The only trial that I would not consider is one that I could get the same meds without the trial, unless I was guaranteed of getting the drug and not a placebo. Stay positive

Ernie

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Guy:

My experience as a caretaker in this disease was with a different form of LC than your fiancee' has, so I can't offer anything on your questions here....but I did want to welcome you to the board and encourage you to post as many questions as you have to everyone for input -- there is a forum for SCLC specifically, a general forum, a caregivers forum (really helpful for venting emotions as a caregiver in this), in addition to many others as you see from the community list --

Knowledge is power with this disease, so I discovered, and this site is gold when it comes to shoving the fear aside, getting the courage up to take this journey, and getting the support you need to keep on walking it.

Best wishes,

Linda

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