Small Cell Lung Cancer

[Sheri]

Regardless of presentation at diagnosis, limited or extensive, next to Mesothelioma, small cell is the deadliest of all lung cancers. We have well wishers that say it responds very well to chemo, which it does, but it has a 90% rate of returning resistant to current therapy.

We have limited and extensive survivors on this site and all of them give us promise and hope. With the exception of Don, all of the male and most female members who were here when my Dad was diagnosed have since moved on.

Remission is achievable for most SCLC recipients, but almost always they relapse. We're waiting on my Dad's results from his recent brain MRI and lung X-ray. I'm prepared for anything and am aware the odds suck.

I ramble, I guess I'm just trying to garner sympathy for the small cell folks. It's a completely different ball game from non-small cell. Wishing good health for all.

[Welthy]

Sheri,

Bravo! You are right on the nose about SCLC. I lost one of my two best friends to it last September after an 8 month battle. While they were fighting the cancer in one area, it made quantum leaps into other areas of her body. They couldn't stay ahead of it. Far more research needs to be done to provide more therapies to attack this vicious form of lung cancer.

My heart goes out to you and I hope the scans go well for your Dad. He is amazing -- and so are you!

Welthy

[lc46]

I hear you!! We are waiting on my Mom's PET SCAN Results tomorrow to make sure it's still only in her lung so they can start concurrent radiation. She was diagnosed with Ext Small cell in Sept and has been doing great since. I am aware every day that it's just a scan away from being bad news again. She is living her life to the fullest and praying everyday that she can beat it. It's a horrible disease. I wish you and your father all the best.

Dar

[Ry]

Sherri-

I hope you get good results. Let us know how all the reports come out. I hope your dad puts a big skew in the statistics and kicks this.

[laban]

Hello Sheri,

You are right on. We have been reading about SCLC for a year now, and yes, there is VERY LITTLE good news about the outcome. I am constantly looking on the web for new treatments and find no new magic cures.

As you can see by our timeline, my husband was diagnosed with LD-SCLC one year ago and had a complete response. Those mircometastes are the buggers we have to worry about. He's doing pretty good right now, but I can't help wondering when the bottom will fall out.

As hard as it is for a self described "future planner" we're trying this one day at a time thing.

Thank you for bringing this truth out in the open.

Paryers for your Dad.

Laurie

[Larry]

As one who lost there wife to SCLC i can only tell you how much in agreement i am with you except for one stat and that is 95% have the deadly reoccurrance. That is why i left the group for a few month's as it get's so hard reading the same similar symtom's with the same result's. So to me it was good to see some one speak out. Thank you....

[Ann]

Although the prognosis for small cell patients often looks bleak, there are many survivor stories. My husband had sclc and it seems that now, four years later, there is little progression in finding a really good treatment plan for these patients. I pray that a cure will be found!

[ernrol]

Sheri,

I learn from your post that there is a 10% that the cancer that does not return. This is based on history and this may change for the better. I will pray that your dad becomes one of the 10%. Somebody has to make up that 10%, why not your dad?

Stay positive,

Ernie

[ztweb]

I have thought so much the way you have thought, and it breaks my heart the reality of those words on a computer screen. We live our lives one scan away from disaster...it feels. Let me ask this...if it does come back, does it always kill?

Jen

[leelee]

Sheri,

Can't thank you enough for articulating what most have us have probably been thinking for so long. It was bold and brave and did a service to anyone suffering from SCLC - or those of us that love them.

My Mum has SCLC - was only more of a social smoker, but the same question is asked over and over - "did your mother smoke" when I tell people of her diagnosis. The underlying sentiment is always there - that my mother did this to herself. I'm sickened by the underfunding of not only SCLC - but Lung Cancer in general. It's not fashionable - mostly because mothers of young children are generally not dying of this disease. But, as those of us that are on these lists and research the disease are well aware of - more and more people that never smoked are being diagnosed with Lung Cancer - but not SCLC. SCLC itself is now considered "rare" as less than 13% of those that are diagnosed with Lung Cancer are diagnosed with SCLC.

I have no issues with how well Breast Cancer research funding has come so far in the last decade -in fact, the opposite is true - I'm overjoyed with how Breast Cancer research/treatment has come. Why? Because my Mum also is a Breast CA survivor - diagnosed when I was 13 years old. I am waiting for that shoe to drop and am some what comforted knowing that if I develop Breast CA - that the treatment options for me are radically different from those that my mother was offered in 1979.

That said, I grow more and more furious, disheartened and enraged at the fact that Lung CA is continually perceived as a "you did this to yourself" illness.

There are virtually no clinical trials for SCLC - and limited treatment options and *NO ONE* seems to care. I'm just disgusted that my mother - who never smoked more than a 1/2 pack of cigarettes per day will forever be labeled as someone "who did this to herself" - because it's an easy way out.

I rant....

Leanne

[Nova]

I edited this post because I sounded like an idiot on a rampage!!LOL!

Guess I was in a very defensive mood about my husband.... He smoked, but of course he didn't set out to get lung cancer....

To anyone that read it, "sorry about that"! I'm normally a very " emotionally controlled" person!I lost it, I admit!!

[Geri]

I've read this thread several times now and all I can say is thank God I didn't have access to it 5 years ago!

While I agree that more research is needed and that it is a far more lethal form of LC this would have taken away a lot of my hope and optimism about my recovery.

I managed to stay very positive throughout the whole ordeal but I think this hand-wringing approach would have gotten to me. Do you all discuss this with the people you are taking care of? I do hope that if you do you stay a little more upbeat about it, as Ernie said if 90% have reccurance then 10% do not, I'm one of the 10% and have no idea why so why not your loved one too.

I find it interesting that there are no sclc surivivors writing here, only caregivers and Ernie (who's nclc but has the right attitude for LC whatever it's form).

Why is everyone waiting for the other shoe to drop? My family and I have been concerned about a return of the beast for 5 years but we do not belabor the what-ifs.....IF it comes back we'll deal with it, but I'm damn sure that it's not going to be front and center and put a damper on whatever lifespan I have left.

My (un-asked for) advice to all sclc suvivors is that when you go into remission please don't waste your time worrying about reccurance.......it may never happen and as our very own Snowflake says the beer truck could be coming round the corner at you too!!

That's it for my Monday morning soap box.

Geri

[teriw]

Geri,

I can't thank you enough for your response. I read the thread when it first posted too (multiple times also), and I couldn't quite grasp where it was going (no offense intended). All I know is I had to quickly distract myself afterwards. Like you expressed, all I could think of was "Thank goodness my husband is no longer reading this site!"

I think when posting in the specific cancer forums, we must remember that this is where survivors as well as caregivers are coming for information AND hope. This sentiment got my hubby in hot water here, but I think it bears consideration. And yes, people here have shown, there IS hope.

[Bev'sSister]

I agree 100% with Teri. I have yet to hear of any survivors with negative attitudes. That was a very hard read for me, and I am sure it was for a lot of others. Somethings are better left unsaid.

[ztweb]

Wow. Geri, I cannot thank you enough. I think when I first read this thread, I was brought back into the "Oh God," mode that I was initially in with the cancer. And since then, I have found myself looking at my dad to see any changes, and waiting for that ball to drop...for dad to be one of 90%. Urgh!!!

No offense to anyone here, as I truly appreciate all that everyone goes through with this disease, but I can say that hope and a positive attitude are what keep us going around here.

Dad just celebrated birthday #67. It was awesome. We had a GREAT time, and all of us kids wrote him a book..."67 Reasons We Love our Dad." Fabulous, fabulous.

Stay positive, keep your chins up, and know that God is in control, and that staying positive is one of THE best treatments anyone can use.

Thanks Geri!

Jen

[MEA]

Hi Sheri,

I understand how you feel, and I find it hard being positive when we are "waiting for the results." I enjoy reading all the success stories as it gives me hope for my husband. But I take the "sad/bad news" posts with the good...because that is how I learn about this horrible disease. I hope we will always feel free to post what is on our mind and in our hearts.

Prayers going up for your Dad and you too!

Mary

[Don]

I have been wanting to make a reply here but have had computer problems. Thanks to Katie I am back up and running.

I am glad to have seen this post. I agree with all of you about the positives and negatives and here are my comments:

SCLC is the worst kind of cancer that there is. It will destroy everything your body has. What is the problem with this: SMOKING. If we wiped out smoking SCLC would drop like a rock. This is a proven fact. We have many people that even after dx they contiue to smoke. Well DUHHHHHH. If you want to live then fight with all you have and stop smoking. I smoked 2 packs a day for 35 years. Quit cold turkey 3 weeks before they told me I had lung cancer. Havent had a smoke since and I wont ever again no matter how I feel.

The truth of the matter is SCLC responds to chemo and rad very quickly and most cases with good outcome. Problem is it comes back within that 2-5 year range. Now here is something that my onc did for me. About 4-5 months after etoposide/carboplatin

the PET would still show signs of something. He wasnt sure if it was cancer or scar tissue. He called this a window of opportunity. Meaning lets treat it like cancer and start the topoteacan. We did. The results are I am here today. Did this window of opportunity kill what was hiding somewhere?

Who knows for sure. Dont wait for it to come back go after it. Be agressive with your treatment.

Keep your weight up. If you stay FAT you have something to live off of when your sick. I dont care if you dont feel like eating do it anyway. Anything and everything. Today ice cream, tomorrow hamburgers, just eat.

I think the louder we speak about how bad this is and what are chances are that maybe someday LC will be funded like it should be. But first we need to shut down the tobacco companies. That will fix about 60-80 percent of the problem. Be aware of whats happening and bring it to the surface loud and clear.

Odds are if you have it you are going to die, question is what are you going to do about it?

God Bless

Don

Thanks Katie for your help. Hey add a spell check to this site for me.

[enyaw061032]

It's hard to read cold facts about sclc, and doing so is very discouraging while at the same time is necessary because we must know what we are fighting and what our chances might be not only to die from the disease, but how long can we live, or what are the chances of survival. It seems only l0 percent survive, so we must strive to be in that small group; and one important aspect of survival is to take control (be proactive) in our treatment, eat foods that are helpful in fighting the cancer, and have a positive attitude, because our minds can control to a great extent what our bodies ultimately do. My doctor encourages weight gain for some reason, so guess it is important to eat and eat well.

Now that we know and face the reality as illustrated in the subject matter, let us forget about it, while at the same time being cognizant of it, and move on to things we can do to help combat this savage beast.

Barb

[twodogs]

I've avoided responding to this thread because the original post is so depressing and not even initiated by a survivor or victim. It does little or nothing to provide inspiration or encouragement to what is supposed to be a supportive network.

And that's all I have to say about that.

[daggiesmom]

Two dogs, you expressed my thoughts exactly. I deleted what I wrote yesterday, because I couldn't express what I felt about that post. It was very depressing.

Joanie

[Don]

I was not trying to depress anyone but these are the facts. After I was told the facts and I decided to do something about it. I am very honest about things and I only mean to get people active about fighting. It bothered me alot when people with a smile would say its ok, or I know how you feel, or it would get better. If you have not had sclc then you do not know how someone feels. Now I am telling you that if you want to fight then get up and do something about it. Fight it until your last breath is gone but do not sit and wait for it.

I want people to be mad about the medical community and the government about not finding cures for this. Stand up and make some noise. Dont be am so sorry for you lets help them get up and go. Encouragement is fine but lets challenge them to get up and walk, to eat, and to believe that they will beat it and not be the babysitter.

Well I wont say anything more about this either but until our voices are heard nothing will be done.

God Bless

Don

[Sheri]

I wasn’t going to respond to my initial thread, however, I think the context has been lost in translation. If I revealed SCLC information to survivors and their loved ones they were not aware of, then knowledge has been gained and knowledge is power. If I could change one thing in my initial post I would exchange the word “sympathy” for “support”. Survivors don’t want sympathy, they need support.

Awhile ago, a limited small cell survivor announced that she had achieved a four year remission. She received a reply that since she was an early stage survivor; her news wasn’t all that encouraging. She hasn’t posted since and even apologized for posting. I hope my post cleared up this misconception. I think survivors of all lung cancers are to be celebrated. As a mere caregiver to the most important man in my life, I am offended that some thought I was not qualified to start this thread. All survivors should have such proactive caregivers. My father had a recurrence last August and I am optimistic he’ll live to tell about it in five years. If optimism and prayer alone could cure this disease, many of our friends would still be here. We need research and awareness. I’ve helped with fundraisers and hope to help again this year.

We can choose to ignore the facts of this disease, but ignorance won’t make it go away. I suspect people come to this website to learn about this disease in addition to receiving support. I came here looking for a miracle and found several in all the SCLC survivors. I hope one day, my Dad's story can offer the same to others.

[teriw]

I think one of the problems is that everyone dealing with sclc, whether survivor or loved one, is painfully aware of its statistics and nasty behavior. Sometimes the last thing you need when trying to fight and maintain strength is to have depressing information dropped on you unnecessarily. When you or your loved one gets that good PET scan, you want to rejoice in it -- not think, "it's only a matter of time until I get a bad scan, so what's the point?" So people react.

My personal reaction when reading the original post went something like, "WHAT THE [insert favorite 4-letter word here]? Who needs to read this?" Because the hopelessness overwhelmed the message of support. I can read it again now and see where Sheri was coming from and what she was trying to say.

While I agree everyone should be able to freely express themselves here, I also strongly believe that the people reading these forums (myself included) don't need to be pummeled with dreadful statistics that they're almost certainly already aware of. It's the people outside of these forums who need the education. "Calls to action," like Don posted are an entirely different story.

Sheri -- bravo to you for putting your time into fundraising. Your dad's story is very inspiring. Prayers for continued NED.

[dscherer]

I feel the need to reply. My mom is in the middle of treatment currently for her Limited stage SCLC. Her esophagus has been burned from twice daily radiation for three weeks. Throw in nausea from chemo. SHe is in a lot of pain and trying to fight with all her might. I believe in her treatment and I believe in her strength. She is amazing woman. I came to this site for encouragement and hope. I know all the dismal facts but I choose to have faith. I read this post and for a split second wondered why she was enduring so much pain if the end is inevitable. Then I continued to read and my hope was restored. Thank you Geri! I have to believe and have hope and in the mean time I cherish every moment I have with my mom. I have to continue to have hope and will continue to hang on!!!

Dana

[Geri]

I guess I need to come back again and explain why I posted what I did.

It's not that I didn't know or didn't want to know what was written, I've lived with all that for 5.5 years, what I didn't like seeing was this sort of negative subject matter in a forum that is routinely read by sclc patients currently fightly for their lives.

I didn't for one moment think that the caregivers weren't qualified to write about this, but I do think that most of the survivors know what they face and don't need to have it put so bluntly. When I first went into remission I worried about a recurrence and the last thing I needed to read was that if it came back I was toast, I didn't need any reminder of the negative side.

I'm not saying that these facts shouldn't be posted, I'm saying that we all need to be aware of our audience. What caregivers or long term survivors can say to each other is sometimes very different than what we need to be presenting to people still fighting, we need to give them a reason to keep fighting not a reason to give up.

That's all.

Geri