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Hello


Marco Jo

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Hi there--

I have been lurking around for a few weeks, so here I am.

My sister, Jeannine, has been to the doctor many times over the past two years for high blood pressure. It seemed odd because we didn't have a history of it in the family. At first they looked for an underlying condition, but settled on controlling it with meds.

In January 06, she compained of shortness of breath. Her doctor sent her for a stress test which was normal. They said maybe she had athsma since she used to smoke. (She quit 7 years ago.) They prescribed an inhaler, which seemed to irritate her lungs. Then in May, she got a terrible cold and pulled all the muscles in her back. She returned to the doctor, was diagnosed with pneumonia, and finally given a chest x-ray. It revealed a mass, they did the bronchoscopy and she was diagnosed with sclc w/mets to the liver.

She is 47. (Our Mother died of lung cancer in 1984. She was 45. We are trying to find out what kind she had. )

My sister is about to start her 3rd round of carbo/etoposide. She is doing amazingly well. She went kayaking last weekend, and has been doing yoga. I have been traveling between NYC and Syracuse, where she lives to be with her during chemo. She has two sons, 16 and 22. My aunt is with her from Florida this month. We all just did the Relay for Life.

Any thoughts on treatments besides the standard mentioned above would be appreciated. We had two opinions, both basically the same in regard to treatment. but she is strong, and looking to be the exception. Also, she is not working. Any info on financial assistaance would be helpful.

Luckily she is surrounded by loving friends who have been incredibly supportive.

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Marco Jo,

Welcome. I am sorry you find yourself here and for what your sister and family are going thru.

You've come to the right place. Sounds like your sister has a good gameplan, a good attitude, and youth and strength on her side.

Will keep your family in my prayers. Keep us updated. Looking forward to getting to know you better.

Blessings,

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Sorry about your sister. There are many different options for SCLC, in addition to the standard protocols which generally start with one of the platinum based chemos, and a second agent such as Etoposide or CPT-11, there are also a number of clinical trials available for SCLC. I've attached a link to the government clinical trial website with results for small cell.

Also, there are so many members here with small cell. Feel free to read through the different forums and look at the bottom of peoples posts. Most tell what treatments they've done and which ones were successful. There are so people here with SCLC that are fighting and beating this. Hold onto hope, your sister is young and strong and can battle this aggressively.

http://www.clinicaltrials.gov/ct/search?term=small+cell+lung+cancer&submit=Search

God Bless,

Carleen

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Hi there. Sorry to hear about your sister's diagnosis, but glad to hear she's doing well on treatment.

A question: Your sister has just finished her 3rd round, so will she be having scans soon to check on her progress? I really hope those nasty tumors are shrinking!

I had cisplatin and etoposide for small cell cancer of the cervix. I went through 6 rounds, and the tumor shrank a lot, but they found "residual" tumor on my small intestine. I was then treated with CPT-11 and more cisplatin (plus pelvic radiation), and since January I have had no evidence of disease (NED).

If your sister does not respond completely to the carbo/etoposide combo, they might very well recommend the CPT-11 (also called irinotecan)/cisplatin or carboplatin protocol. That's the combo that seemed to get the last of my cancer.

Best wishes to you, your sister and family.

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Dear Marjo, it's so hard to have to deal with the cancer PLUS costs. Scroll down a few messages on this board to NEWLY DIAGNOSED, NO INSURANCE and there are a lot of replies that might help you or steer you in the right direction. I know that your sis will not be denied treatment because of no money, the trick is to find out where you need to go to get it. God bless you friend.

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I have a friend in our local group who has SCLC and I believe she had mets to the liver. She is more than 5 yrs and doing well. She also had preventative radiation to her brain. SCLC tends to spread there and this seems to prevent that. I hope your sister responds to chemo as well as my friend here in Minnesota. Keep us posted.

Donna G

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Dear MarycoJo,

Small cell responds very well to chemo. :D I also know the person DonnaG is talking about and not to correct Donna, our friend is a 7 years Small Cell LC Survivor and doing just fine. She is NED!

I also know a lady who is now a 14 year Small Cell Lung Cancer Survivor and she too is doing well today.

This can be beat. I just wanted to offer some hope to you and your sister. And for what it's worth, I know more then 2 Small Cell LC Survivors that are out 5 years and plus and are cancer free.

God Bless and keep up posted.

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Hello Marco Jo and welcome,

I am sorry to hear about your sisters diagnosis. It does sound like she has a lot working in her favour though.

As the others have pointed out this is a great place to get answers and information. We are all here for you any time you have questions or just need to vent.

Keeping you and your family in my prayers,

Chris

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Hi Marco Jo!

Sounds like your sis is doing great! I too have SCLC and have placed it in remission after 6 months. You let her know that she can do it! She may want to look into a great diet. I'm avoiding all sugars and red meat. I'm taking protene supplements to help build my muscle mass back so that's an option if she enjoys a healthly lifestyle which I think she does. Since she's not working, encourage her to take a look at the thread at the top of the SCLC forum from one of the members who wrote a note on how he beat SCLC. It's very informative and inspirational. She needs to make sure she's exercising to keep away the blood clots.

There are alot of people here to help you and your sis. Whatever you need, just drop a note.

Much love,

Darrell

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  • 2 weeks later...

Marco Jo,

I am so happy to hear about your sisters' progress!!!! She is definitely responding well to her chemo. The one thing I definitely know about sclc is that it is a constant battle that you can't give up fighting....I know your sister can fight the fight, like I tell my husband, she is young and has her children to think about, having a fighting attitude is one of the best things one can have with this beast.

Grace

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Hi Marco Jo,

So sorry about the diagnosis of your sister. But it certainly sounds like she is a fighter and doing really well by not letting this dreaded disease get her down. I am glad she is staying active. Bless her soul!

They seem to be doing the right treatment for her. I pray for good scans. Keep us posted on her progress.

Also, I can she has a positive attitude, that is half the battle there.

Maryanne :wink:

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Welcome to the boards. I am so sorry that you need to be here, and please know that I will say a prayer for you and for your family. What a heart-wrenching disease.

You have come to a wonderful place. My dad is battling sclc also and it sucks. He too is doing very well...and we are looking at a cure here soon...at least that is what the docs say. We are going tomorrow to get more info.

There is a man here, Don, who had similar to your sister. SCLC with mets to the liver, I do believe. He beat it and is looking at NED (no evidence of disease). He is an AMAZING person to talk to. I called him on the phone actually and took notes for over an hour. I will send him a PM that he should contact you.

God bless and take care!

Jen

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