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SCLC Extensive


Guest kady123

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Guest kady123

On Feb 17, 2004, my 64 year old father was diagnosed with small cell extensive stage of lung cancer. He stopped smoking over 22 years ago. He just received his 3rd round of chemo and sees a radiologist tomorrow. He has a very small metastsis on his liver and <.5mm on his brain. His chemo started off a little rough but they seemed to have gotten the medication right and he appears to be in good spirits. I have a hard time believing that he is so sick. He played golf today and seems so normal.

The doctors will assess this week if they need to do radiation. They said that the spot on the brain was so small that they were not concerned. They said it may even go away.

What are my father's chances to beat this illness? Since he has not smoked for such a long time, does he have a good chance for long term survival? How will radiation affect him if he needs to have it? Are we doing enough for him? Is there something else out there that we should be doing?

The nurse last week told us that small cell responds very favorably to chemo. If he has such a small amount on his liver, should the chemo take care of it?

Thanks for any information you can share.

Kady

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Kady,

I would love to be able to answer your questions but all I can say is everyone is different. It sounds like he has a good team working with him so I am sure they will be able to give you a lot of information. DO NOT listen to statistics however! They are so old for the most part that they really don't do much good. Treasure the time you have, make memories and have fun!

Prayers for success with the chemo.

God Bless,

MO

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My mom has extensive sclc. From what I have learned on this board, I would say make sure your dad's onc. is as aggressive as your dad wants. And encourage him to be a bit of a hypochodriac. The bad stuff that can happen, from chemo reactions to recurrences, happen really fast. Any new symptom or significant change should be checked out.

Radiation, according to my mother's dr, will increase chances of survival. However, with ES SCLC, there is a balance between possible benefit and quality of life. Radiation was not brought up for my mother until it was discovered she had an excellent tumor response to chemo. Then they recommended radiation to the lung and her pancreas met. It's tough for the patient, though - mom is very tired.

If your dad's onc. is anything like my mom's, then the first set of scans after starting chemo will be very important.

Hang in there - your dad could be one who does very well. And the fact that he has quit smoking will help him stay strong for treatment. Encourage him to enjoy each day he feels well and keep him golfing! Keeping a positive attitude is important.

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Guest daviskathi

Hi Kady123,

Glad your here but sorry you had to search us out. You have definitely come to the right place. The people here are a wealth of knowledge and have been extremely supportive. Glad your dad is feeling little effects so far from the chemo, that is always good news! Now, you said his oncologist said that he has a small spot on his brain and not to worry about it? Well, SCLC can metastisize extremely fast and I would be concerned. Traditional chemotherapy is not effectively able to cross the blood brain barrier. I would definitely talk to his doctor about monitoring the mets to his brain. Like mentioned in another post, you really have to pressure the doc's to be pretty agressive. Unfortunately this disease can spread rapidly so you want to be on top of things. One things is for sure, your dad is fortunate to have you that is interested and wanting to find out information on this disease.Everyone here can attest to the importance of a loving supportive family. Good luck to you all. Keep us posted on his progress and don't feel shy about asking any questions to the board. If one person doesn't know, someone on the board will or will try to find the information for you.

daviskathi

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I have been around 3 yrs and 1 month with extensive SCLC so do not look at the stats. As for the small mets to the liver and the brain! SCLC spreads SO FAST. I had a scan in 11/02-clean then another CT in 2/03 and a new tumor in the L lung-baseball size. So no mets is a small thing. The chemos-I do not believe -get to the brain mets due to a blood brain barrier. So another treatment is needed for that. I would get a second opinion about not treating that brain mets!

Glad you found us. There are so many great people here. Good luck, Cindy

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Cindy,

I am curious about your tumor, what kind of symptoms were you having with a large tumor like that? Was it very painful? they told us my Dad had a tumor in his lung, but he never complained of any chest pain. His symptoms were vision problems. thanks

janet

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Kady,

Sorry to hear of your Dad’s SCLC. As is often stated here, it is a fast and aggressive form of LC. For this reason, the cure rate is not very good. I will not go in to statistics and disturb people’s optimism, but having quit smoking long ago will probably not change the odds of a cure. Because SCLC grows fast, it is prone to a quick response to chemotherapy, which targets fast growing tissues. There always seems to be a number of cells that are immune to the chemicals, and they grow back. As mentioned, the blood-brain barrier exists in our bodies to shield the brain from many substances floating in the blood. Many drugs including most chemo-therapeutic agents will not readily pass into the brain, so radiation is used.

The chemotherapy will probably shrink the liver metastases and the lung tumor, but they usually come back after a few months, according to the literature. Your Dad may look OK today but may become anemic or have other problems on short notice. I have been enjoying a period of a couple of months since I got over draining fluids and chemotherapy anemia, but am back to fluid build up in my plural cavity with nagging pain and questionable nodules on my adrenal glands. Every one is a different individual, but SCLC has a cycle it follows. Mainly it grows fast, spreads fast, responds to chemotherapy, but comes back. Brain metastases are common and troublesome.

Hope I don’t sound too pessimistic, but this is a nasty form of a deadly disease.

Dan

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Janet-I really did not have new symptoms. I have been short of breath when I do to much but that had been common for me. I was surprised when they showed me the scan :shock: I had no idea it had popped up. I was put on chemo and radiation for that one (2/03). When I was first (2/01) diagnosed the sclc had mets to several places so they only did chemo-no radiation at that time. If you have any questions please pm me.

Love Cindy

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I am not sure whether the chemo will take care of the little brain mets. But I suggest radiation because brain is the most common site of metastatsis of lung cancer. Some micrometastasis to brains will not be detected by tests and scans. They are too small...

Small Cell LC is an aggressive cancer and normally during the initial chemo (first-line chemo), the response is very excellent but unforturnately it relapses very fast. BUT, no one knows when it will relapse, someone is fast, someone is not fast. Everyone is different. The only way to do is keep looking forward.

Any new symptoms, you have to pay attention to. Normally, the most common mets are : brain, liver, bones, spinal etc... You could come to this site for asking us as we may have more knowledge on this. You also could get those info from many websites.

Knowledge is important as you will be the advocate!! And you know what basic knowledge for communicating with the oncologists.

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Kady:

The people on this board will help support you through your dad's illness. When I read your post, I felt it was me posting for the first time. Ignore the stats, attack aggressively and support your dad in his decisions. My dad fought his battle with everything he had and maintained a positive outlook throughout his illness. He was 69 and had quit smoking over 20 years ago. Doesn't seem like this disease would lurk in hiding that long, does it? Treat your dad as you always have and help him stay positive! Any questions/problems you encounter can be answered here. Prayers to you and your family!

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Hello Kady -

Like others have already, this is your 'safe place', where there is information you can trust and feel empowered. This is how I felt when my 60 year old husband and I leanred that he had extensive small cell lung cancer to just about everywhere except for his brain! What I've found for me is what others here have already mentioned -- read, learn, ask questions and don't stop~ Get Second opinions - third if you feel you need them. This is absolutely life and death and the more information you have, the more you know and can be that support for your father.

It has been my experience that absolutely nothing should be taken for granted as you've heard: what seems "normal" today with small cell, can turn into terrifying havoc tomorrow. And above all, my feelings are that this is where you and your father must trust your instincts about the physicians that are giving you information..... We've just switched doctors and will travel 600 miles round trip once a week pretty soon to get what we believe, is pro-active, compassionate state-of-the-art and vigilent care. There are many good cancer centers and good oncologists but you have to know the questions in order to get the answers yiou need first. Search the web, write to me or to any of us privately if you'd like, for more sites on line if you need them. We're all here for you.

Beth

=================================

Huband diagn. 12/5 w/stage IV SCLC w/mets to the bones,

spine, ribs, liver and lungs

11 weekly treatments of carbo/taxol. Present Dr. wants only

"palliative" care -- no more scans, blood work, etc.

Left today for Moffitt Cancer Institute - they will start from scratch

and treat the "patient" individually, "not the cancer". Hopeful, prayerful

and vigilent......

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