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Mom just diagnosed with small cell lc.. HELP


Chris

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I am looking for any information or websites about this. I have found a few but I would like to hear more. Info about treatments etc...

She goes in for an MRI on Tues and will have her lung drained this week... they are talking about starting chemo as soon as the following week. She is 2000 miles away from us and we want to do anything and everything we can to support her.

Please help :(

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Dear Chris,

You've landed on the greatest website for information and support regarding lung cancer patients and caregivers. Take time to read as many previous posts as possible. I'm sure many of your questions will get answered right away. Don't hesitate to ask any questions at all. Everyone on this board wants to help out. There is litterally a Goldmine of information available on this board.

Susan C.

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There are a lot of websites that have information on the topic, however, most of your answers can be found here. Ask away, and you will be getting 1st hand information and answers from basically what I would call the experts when it comes to this disease.

My wife has used this board as a significant resource for questions and answers regarding her father. She has taken this information to the oncologists and have made some miraculous changes in his well being.

It will be very difficult offering support at a 2000 mile distance as I have seen my wife spend a significant amount of her time each week performing this task and she is only 2 miles away.

I am sorry to hear about your mom and will be praying for her!!

Remember, its not the doctor that controls how long, it is God! So dont take everything you hear from the doctors prognosis to heart

Rickey

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Chris,

My mom was also just recently diagnosed with SCLC with mets to the liver. This board has been a great source of information and support for me. Read through the messages and you will find alot of answers to your questions. I will keep you and your family in my prayers.

God Bless,

Susan

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My mom was just diagnosed with small cell lung cancer with mets to the pancreas a couple of weeks ago. She just started chemo last week~ Paraplatin and Epotisode(VP-16). 1 week on, 3 weeks off right now. It has only been a a few days since the first chemo treatment and I swear she seems a lot better. It is a terrifying disease. A lot of stuff you read on the internet can give grim statistics. I try very hard not to focus on that. Good thing she is starting treatment asap, b/c I think that is very important with SCLC. With my mom her tumor grew unbelievably fast. When they discovered it, it was already 13 cm!!!

I will pray for your mom and I am sure treatments will help her. This board has been extremely helpful to read.

Hang in there.

By the way, if you got to the ALCASE website, (accessible in one of the forums here, the one on the very bottome, I think), there is a lung cancer manual that you can read on line. I just recently read parts of it and ordered a copy. It is a very good resource to check out.

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Hi Everyone,

Chemo treatments work very well in the fight against Small Cell Lung Cancer. I also will share with you that I know many Small Cell Lung Cancer Surivors, (over 2 years) and doing well! Some were dx.d at Limited stage and some at extensive stage. As much as you will read about the Negitive side of Small Cell lung cancer, please know there is also a POSITIVE side and people DO SURVIVE!!

From my understanding Small Cell is mostly treated with Chemo's and Radiation Treatments. Not often do they do surgery on Small Cell, but not to say they haven't done surgery in some cases!!

CT Scan's, MRI's (brain), PET Scan's, Bone Scan's, are all very normal types of scans for those of us that have had lung cancer. This is pretty much the normal routine. And of course BLOOD WORK!!

ALCASE (Alliance for Lung Cancer Advocacy, Support and Education) is a wonderful place to find help as well, as some of the people have shared with you. They also have a 1-800-298-2436 number if you wish to give them a call.

Wishing you ALL the Best!!

Warm and Gentle Hugs,

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I too, was diagnosed with sclc in Feb. 2001, 2 YEARS AGO!!!!!!!!!!!!!!!!!!!! I had chemo for 9 months and that is it. I see my Dr. every month for chem. profile, cbc, and a ldh. The later I guess it elevates if the ca is growing. I get a CT every other month, I have had 2 bone scans, no mri's tho. I was not a candidate for radiation at that time and certainly not surgery. Mine was extensive but I am doing well today. There is hope out there. For me it my belief that God has lead me thru this entire ordeal. I do not hesitate to give Him the glory.

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Thanks folks, this ID is shared between my wife (Christi) and I (Shane). Right now we are trying to understand what is going on and remain level headed. We understand thinking and believing positive is a major key so we are trying to pass as much as we can onto my mom from long distance. We will read through as many threads as possible to find information. I would like to share what has lead up to this;

In November my mom had her annual physical as she does each year and everything was fine. She has never smoked and is in great condition for a 61 year old, other than the present condition. Near Thanksgiving it started out as a suspected cold and after many trips to the doctor’s office for flu symptoms, they now thought it was pneumonia. A CatScan determined she had fluid in her right lung and they drained about 2 liters of fluid from it. That fluid was then tested and she was diagnosed with Stage 3B non-small cell cancer. They have since run another more intensive CatScan, which discovered nothing new, aside from the fact she currently has much more fluid in her right lung again, about 5 liters. They don’t see any tumors at all so far. She is meeting with the surgeon Tuesday morning to schedule the fluid to be drained sometime this week, and she also has an MRI scheduled for Tuesday afternoon to determine if anything has spread to the brain. They suspect it has but don’t know for sure without tests. Once the fluid is drained they are inserting a Talc powder into the lung and immediately starting a combination of chemo and radiation. After about a week they plan to do a PetScan to determine how much and where the cancer has spread within her entire body. The initial prognosis by the Oncologists was not very encouraging but it seemed honest and he appears to be very good. The speed in which all this is taking place seems to be very lackadaisical when it comes to setting up appointments, getting the fluid drained and moving forward. We are all very anxious to proceed but do not know what to expect as far as a realistic timetable to follow.

One thing we are confused about is, it’s our understanding non-small cell cancer is associated with tumors. And given no tumors have yet been identified how was the prognosis of Stage 3B determined without further tests. We are assuming there could be small tumors present that cannot be identified by the CatScan that will be identified by the MRI and PetScan if present. Is it possible to have Stage 3B non-small cell cancer without tumors? And if so would that be an advantage in fighting the cancer?

Thanks everyone,

Shane

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Shane & Chris:

The following is a quote from the National Cancer Institute (http://www.cancer.gov):

stage III non-small cell lung cancer :

Cancer has spread to structures near the lung; to the lymph nodes in the area that separates the two lungs (mediastinum); or to the lymph nodes on the other side of the chest or in the lower neck. Stage III is further divided into stage IIIA (usually can be resected which is sometimes treated with surgery) and stage IIIB (usually cannot be resected which is rarely treated with surgery).

I would assume, that since cancer cells have been found in the pleural fluid, which surrounds the lung, therefore being outside of the lung, is the reason for the Stage III, based on the above definition. I would, however, ask the doctors for their reason for staging at Stage III.

You also can go directly to the defininition at this link: http://cancer.gov/cancerinfo/pdq/treatment/non-small-cell-lung/patient/#Section5.5 Click on either stage IIIA non-small cell lung cancer or stage IIIB non-small cell lung cancer and you will get the above definition. The normal recommended course(s) of treatments are also listed.

I hope this information helps. It has been my experience that the doctors, generally, follow the National Cancer Institute's recommendation for staging and subsequent treatment.

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Dear Christi and Shane,

I just want to add that I have talked with several doctor's that say staging can be very confusing and tricky at times even for Doctor's! :) None the less, I would also like to point you in the direction of ALCASE. They have a lung cancer manual that does explain staging as well, along with a wonderful chart that is written in laymens terms and easy to understand.

I encourage you to call or email them at: www.alcase.org

1-800-298-2436 or (360) 699-1944.

My suggestion to you is, try and wait to get back all the Scan results from her doc. I know for me, I wouldn't even dream of trying to give you an opinion without the results of all her scans. But, then again, I'm no Doctor, I'm just a Lung Cancer Survivor :) ! That's a hard call!

I wish you and your family all the best.

Warm and Gentle Hugs,

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Dear Christi and SHane,

Welcome to the board, I am very sorry we have to meet under these circumstances but you have a great bunch of people here in your corner and who know exactly how you both feel. We are all here for you and as we lean on each other, know that you can lean on us too. Keep us updated on your situation and your family will be in our prayers.

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Christi & Shane,

As my oncologist put it, "We want to make sure we have all the tests done before treatment begins, in order to Stage you correctly." Staging took over a month, and, believe me. I was really chomping. :evil: Why couldn't they just start something!!!!! Grrr.

Well, as it turned out, after all that waiting and testing they still managed to mis-stage me. That's why I encourage everyone to NOT treat doctors like gods. Thay are far from it!

Be positive and look for the best. You might just get it! JudyB

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On my way home, from the hospital, following my 1st surgery, I stopped to see my Family Doctor. When he came in the exam room, he hugged me, gently to say the least, then he cried because he believed that he had missed the diagnosis. (If you rememer, I was diagnosed while being evaluated for injuries following a car accident.) I told him that no one knew, or suspected, that I had LC, as I had no symptoms. It wasn't his fault. Doctors are not without fault. They are as human as you and I are. They respond to symptoms and, sometimes, those symptoms can be misleading. (I have had the same Family doc for over 23 years, and sometimes I think he knows more about me than I do - we have also been mentors to each other as he is fighting prostate cancer.)

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Shane here, hello everyone;

DaveG, thanks for link. I had previously looked there but for whatever reason never made the connection with Lymph nodes being associated with 3B. That makes sense now, as that would most likely be related to the fluid in the lung, (Pleural Effusion).

The difficulty my wife and I are trying to over come is, working to restore confidence and a positive attitude with my mom and step dad. At this point they appear to have accepted without question the expected survival rate and prognosis given by the Oncologist. Understandably it is going to be a HUGE shock for them to absorb all this at first, so we are hoping that as time passes we can help turn them around mentally. I believe my mom's situation could vary for better or worse after the further MRI and PetScan has been completed and reviewed. I'm sure the Oncologist did base his prognosis off certain criteria being met, and maybe as an average would apply, but it MAY NOT, we don’t know yet the real extent, only that it is present and isn’t a good situation. Today and tomorrow will hopefully provide additional information.

On a side note, my brother (only other sibling) and I gave my mom and step dad a computer for Christmas (they are computer newbies now) and it is turning into a blessing in disguise being able to communicate via email and pass on all the valuable information we discover that could possibly help now. Who would have known back then how important a tool it would turn out to be for them.

Shane

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Shane and Chris:

I have to estimate that your mother is close to my age (59). When I was diagnosed in Sep 2001, at 57, a month before my 58th birthday, the diagnosis caught me and all the doctors totally off guard, as they were evaluating injuries from a car accident. Getting that kind of a diagnosis, when it was not expected, was a devastation. Even the doctor, who gave me the results of the CT Scan, was taken back by the diagnosis. He had done two hernia repairs on me, and we had gotten to know each other fairly well.

The diagnosis set me back. I just spiraled, downward, through many emotions. Where I live, at that time, there was a only a general cancer support group. I went to one meeting, and there were no other lung cancer patients there. No one truly understood lung cancer. I turned to the internet and found the support I so desperately needed. A good positive attitude is so important. Lung Cancer can be beat, as you have found. As long as your mother knows that support is available, is important. You can't always get people to go for support, but sometimes just knowing it is there can help. :)

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Hi folks, it’s been a long week. Last Tuesday was the MRI to see if the cancer had spread to the brain. The results were supposed to be available Wednesday but my mom decided she didn’t want to know the results till after the surgery to drain the fluid from her lung. She figured since nothing would be immediately done, why find out and worry about it. She just wants to take one step at a time. So she had surgery Friday and they drained about 5 liters of fluid from her right lung. Apparently they don’t use Talc powder for this procedure anymore, but now use an antibiotic, which is sprayed in between the two layers of the lung where the fluid collects. The procedure also fuses these two layers together using a suction device to help prevent any more fluid from collecting. It was about a 15-minute procedure and everything currently appears to have went well. She spent Sat-Sun at the hospital with a tube to drain any additional fluid. Ended up spending a third day as apparently the machine was not hooked up correctly and didn’t drain all the fluid out, but after they fixed that she went all day Sunday with no more fluid draining which the doctor said was good. So after a chest x-ray this morning she may get to go home. I believe the next step is to start chemo and radiation ASAP. She has a scheduled meeting with the Oncologist Friday so she wants the MRI results direct from him and not the general doctor or nurses. All and all she sounds very good and is gaining hope and being positive as things now start to happen. I think it was simply all the initial waiting that really depressed her and my step dad. Now that things are starting to happen they are going to need even more support especially if there is any more bad news, we are hoping for the best and keeping are fingers crossed.

DaveG, my mom is 61 (birthday Feb 24th)

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Hi Shane and Chris,

Hope you both are holding up okay under all the stress... My Mom had SCLC too and her lung was collapsed. She lives in New Hampshire and I'm in San Diego. I'm the child who is the most active in her care although I'm the furthest away. It wasn't easy for my Mom, but we got through it and I'm sure your Mom will too. Although I flew out there to take care of her after chemos, I wasn't able to be with her when she heard the news that she is in remission. I will see her March 7th, and I can't wait to hug her!!! :D

Take it one step at a time, you will get through it..we will be here if you need us! :wink:

Think positive thoughts!! Praying for you and your family.

Laurie :D

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Hi Laurie,

My mom lives in New Hampshire also, that is where I grew up. My wife and I now live in Texas. She is being treated in Claremont and soon in Dartmouth for certain things. We are holding up good but lack of information and confusion is what's driving us crazy. My mom stayed a fourth night at the hospital because they were having a big winter storm yesterday and the surgeon never made his rounds to talk to her and release her. In talking to her last night I discovered she does have a tumor located near the breast bone on her right lung. That bit of information came from no where, up untill now everything we have discussed indicated no tumors were found. I'll attribute that oversight to too much overwhelming information at once. Not being there first hand leaves quite a gap in the communication line.

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Hi,

My Moms tumor was located on the bronchi it was 8cms near the center of her chest. Chemo should disolve the tumor, these type of cancer responds well to chemo and that is how it is treated usually. Sometimes they will operate but not very often.

Thats a beautiful area that your Mom lives in and Dartmouth is certainly well respected.. She will be in good hands. My parents are not good communicators either, their in shock and all. I was lucky that I am single and my boss is very flexible with giving me time off or I probably wouldn't have been able to talk to the doctors in person either. You might want to see if you can get a form signed or her to give them just her permission for the doctors to release medical information to you and discuss her case with you. I have that And I just call and talk to the doctor or he will call me back. If he is not there the nurse talks to me or takes the message and calls me back with the info. It helps me out a lot especially being so far away it is so hard..being in the dark and all...

My thoughts and prayers are with you. If you have any questions or need to talk you can email me too. Keep us updated... thinking of you and your family :D

Laurie :D

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Hi folks, I have some good news that came out of this past week. My mom met with the Oncologist on Friday to go over the results of the MRI. She also had another chest x-ray done before the meeting so they could also review how her lung looked since the surgery to drain the fluid. The MRI showed there is no cancer in the brain and everything there is normal. The chest x-ray showed no new fluid in the lung and the two lower chambers that were filled with fluid and not functioning have since re-inflated and started functioning somewhat normally again. Today is my mom’s birthday and she said she got the greatest birthday present she could ask for on Friday. She sounded like a million dollars on the phone. The Oncologist was also very surprised. Originally the tumor was thought to be about 3 cm large and near the breastbone. She goes Tuesday (tomorrow) for a PetScan to identify exactly where through out the body the cancer actually is, and chemo may start near the end of the week. So right now the situation is obviously still serious but some additional hope has been restored and we are all keeping our fingers crossed.

Lauire, I took your advice and had my mom sign the consent form so the Oncologist can discuss the situation with my wife and I also. He gave us his email address if we have any questions. Thanks for the tip; I never thought of that it might help to decipher all the information as we struggle through this ordeal.

So right now we all feel that a battle or two have been won, but the war is not over and the road is a long one. We appreciate everyone’s comments, information and suggestions. It’s too bad a website like this has to exist because the world is not a perfect place, but the fact that it does exists makes it a better world for those lucky enough to discover it.

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Dear Chris and Shane,

Just reading your post lifted my spirits, so I can imagine how you and your Mom must be feeling; you've received promising news. I'm glad you guys will have a share in obtaining information. If you haven't done so already, perhaps you could ask for hard copies of scan results, chart notes, etc., etc., to be sent to you as well as getting verbal and email reports. It's nice to be able to refer back to them as the situation changes. Best of luck to all of you!

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