Small cell survivors, please help, does this get easier?

[Starr13]

Hi everyone - I am sorry I haven't done my profile yet - I promise I will do it soon - anyway, diagnosed 9/14 small cell, mets to liver, scans after two chemo sessions show 85% tumor reduction and the liver mets gone; had fourth chemo session last week; more scans scheduled for December 10, then, they will decide if I need radiation or if the cancer is gone, then nothing to radiate, then I will have chemo five and six, and then the PCI decision.

I have every reason to be positive and even optimistic - I am on NO medicines of any kind, haven't missed a day of work, even work out in the gym, lifting weights, etc. every day, all blood counts etc. normal, no problems, I don't even have a port installed - the nurses just start an IV. I get my chemo and everything works perfectly. Not even a single side effect, except that my hair fell out, but, other than that, nothing, not even a mouth sore. Have gained about 10 pounds since diagnosis, that's because the steroid injection makes me eat I think. Physically I do not feel sick or out of sorts at all.

I did smoke, but quit a few weeks prior to diagnosis, and haven't smoked since or even been interested in a cigarette. My oncologist uses the word "cure" when he talks to me.

My problem is that I seem to be in a constant state of absolute fear and terror. When I read survivor stories, I can get to where I am fine - for a few minutes I truly believe I can win this, or at least work it into a chronic disease. But then when I read a post about someone who isn't doing so well, I just get very, very badly frightened, nervous, upset, etc. My scans after second chemo, I was so nervous I started to cry. I am worried out of my mind about these next scans, which is silly, because I can "feel" that the cancer is nearly - if not totally - gone, but, even if there was something like progression, I do know that there are other options, I am still in first line treatment.

Does this get easier? Is there a time when the cancer gets a little smaller in the rearview mirror, and it is not quite so overwhelming and so scary?

I need to find some way to keep my head on straight, and not be so terrified all the time.

Last question, is it within range of possibility to somehow come through this NED and no relapse or at least a very long time until relapse?

[Starr13]

Katie, thank you so much for that. It always helps to hear from survivors...

Can you tell me, is it possible to be happy again? Does there come a time when this isn't quite as overwhelming?

[lc46]

Hi and welcome to a wonderful place full of support

If you read my Mom's profile below you will see she too was DX with Ext Small Cell with liver mets, adrenal and even a small brain met. My Mom is doing very well-yes she treats this as though she has a chronic disease. I can only tell you from a caregiver (not that I am anymore-she moved back home over 1 year ago and has her life back completely)

My Mom swears by her antidepressants-she would never be as calm about all of this without them.

This can be beat-there are small cell ext survivors out there.

Wishing you the best through this new journey in life. Keep us posted

Dar

[Starr13]

Dar, thank you for replying, I sincerely appreciate it, and am I very glad to see that your mother is doing well...

[Doughnut]

Hi - I rarely post here anymore but still check in from time to time. Just to say to you that there are many, many long term SCLC survivors on this board. Cindy RN's over 5 years out from extensive SCLC if I remember right and she only seems to post sporadically because she's so busy leading her life. I've also just seen a post from Joan who's been absent for the same reason. There is definitely a time when it becomes normal. At the time I was active on this board people with SCLC were leaving because their lives were getting back to normal and they wanted to get on with them - I remember a woman called Sandy, I think - very active on here then met a fella and off she went. I have seen the very occasional post from her.

[Wendy]

Hi Starr,

Welcome to LCSC! I am sorry to hear about your lung cancer fight. No doubt about it, the diagnosis is very scary and can turn your life upside down.

I understand your fear and anxiety. I found that talking about it helped me to cope. Use this forum, a licensed counselor, a close friend, a member of the clergy, family, your doctor, a local support group, american cancer society, etc..... Many survivors (me included) have added antidepressants to their treatment to help us deal with the anxiety and fear.

Remember that there are many survivors living life with lung cancer. The journey isn't always smooth, but it doesn't have to control you.

I wish you the best,

Wendy

[twodogs]

HI Starr and welcome to LCSC.

I think you are fortunate to have found this group of folks so soon. When I was diagnosed in 2003 it took me almost a year to find a place on line where I felt both comfortable talking and asking about it and encouraged about the processes. This is it.

.

Many other sites were mostly focused on anger and activism and , while I agree they have that right, it just wasn't what I was looking for.

If you spend a little time here searching through these stories you will see that many others have walked your path and have had success. I would avoid anything obviously negative or angry because there are many, many more positive perspectives. You can see and feel when these are turning and right now you don't need that.

Like most of us, you are probably going through the most anxiety you've ever experienced but your Oncologist seems to be very positive. I found early on that the attitudes of my doctors provided me with hope and inspiration when things looked pretty darn ugly. The only one I got to say "cure" was my Radiation Onc. but that was enough.

Now I'm relying on my Chemo Doc and just got today's Cat Scan report that my recurrence,(which started in June), has stabilized. Very good news for us.

We just keep on chuggin' with faith in God, Medicine, doctors, friends and family including all the folks on this site.

Keep the faith and best wishes.

John

[dchurchi]

Hi Starr,

I am sorry you need us, but glad you found us. I am

the wife of a wonderful man (Alan) who on Jan 10 2008

will have survived 3 years with ext. SCLC. Please

read Alan's profile. Does it get easier, yes I think

it does. You will find your "new normal" as I like

to call it. Scan time is always the worst, because

I think it brings the reality of the situation right

in front of you. The key is, no matter what, do not

let the beast control you. If you are "thinking"

about the "possiblity" of the cancer coming back, then the beast has control.

Prayers that you continue to kick the crap out of the beast.

[Starr13]

John and Debbie, thank you both so much for your replies, they both made me feel so much better. Everything I've read, as well as SEER stats indicates that once you make it to about the 2.5 year to 3.0 year mark with sclc the rest gets a LOT easier, although it is necessary to continue with keeping a frequent scan schedule because of the potential for second primary cancers - but - even this possibility is greatly reduced over time if the patient no longer smokes.

John, can you please tell me what "stable" means? Does that mean the tumor is still there, just no longer growing, or, does it mean that it is no longer cancerous? If it is still there but no longer cancerous does that mean it could become active at some time again, or (???). Does tumor or the mass of cells or whatever it is ever actually go away, or, does it just sort of hang around there forever? Sorry I have so many questions, I just don't fully understand what happens to cancer cells after they're nullified or whatever it is that raidation and chemo doed to them. Whatever the answer, I am happy for your result and also very relieved to see another survivor.

Debbie, I have been reading Alan's case for a while - it's rather astonishing considering that he has had no chemo. I am thrilled for him - what an unusual treatment schema though LOL. It is so very encouraging to continue to read good news.

[Connie B]

Hi Starr13,

Just wanted to say, you might be better off asking Dr. West your questions below. www.onctalk.com

stable disease - Cancer that is not decreasing or increasing in extent or severity.

Also you can click on (glossary) on the left side of any page here and look up information and get some simple answers.

"Starr13"]

John, can you please tell me what "stable" means? Does that mean the tumor is still there, just no longer growing, or, does it mean that it is no longer cancerous? If it is still there but no longer cancerous does that mean it could become active at some time again, or (???). Does tumor or the mass of cells or whatever it is ever actually go away, or, does it just sort of hang around there forever? Sorry I have so many questions, I just don't fully understand what happens to cancer cells after they're nullified or whatever it is that raidation and chemo doed to them. Whatever the answer, I am happy for your result and also very relieved to see another survivor. quote]

[ztweb]

Star,

I don't know how I missed your posting earlier! So sorry! I know the terror you live with every day...and getting through each day has been an event at our house, but we are doing it. Dad has been in remission for almost 1.5 years. Do I worry every day that it will return...YES...but I have always hung on to this. If one person can survive...then why not two? And why can that next person not be my dad?

I find that the new normal involves hanging on to the good stories. The new normal is living with that dull ache inside of me, where I know what COULD happen, yet trying to cover up that dull ache with peace, hope, and the blessings of life.

We are faithful people, and I pray every day in thanksgiving of remission and for the miracle of healing. I do that for all of those here. I remember asking for people to pray, both for my dad and for me in my quest for healing and I remember getting shaky at the number of people who sent their prayers. God knows to watch out for my dad. For that I am certain.

May you know the comfort that can be found, while dealing with this dreadful disease. It sucks. There is no doubt about it! But people can live, they can survive, they can be cured. That can be my dad or you, or ConnieB, or Geri from these boards. The list is endless.

Blessings to you!

Jen

[Starr13]

Slobberdog, I don't know how I overlooked responding to your post (chemotherapy impacting my brain I suppose) especially considering how similar your mother's diagnosis is to mine...I am so happy to hear that she is doing well. I am also very glad that her doctors have evidently been very aggressive with treating her.

Thank you so much for posting, I appreciate it very much.

[Starr13]

Jen, thank you for your post, that's really cool, your dad has been in remission 1.5 years...I am happy for you and for him and I hope that he is in for a very LONG remission!!!!

Didn't someone on this board have a father in a 20 year remission position - it seems as if I read that somewhere in one of the profiles, but now cannot remember...

[twodogs]

Starr,

"Starr13"]

John, can you please tell me what "stable" means? Does that mean the tumor is still there, just no longer growing, or, does it mean that it is no longer cancerous? If it is still there but no longer cancerous does that mean it could become active at some time again, or (???). Does tumor or the mass of cells or whatever it is ever actually go away, or, does it just sort of hang around there forever? Sorry I have so many questions, I just don't fully understand what happens to cancer cells after they're nullified or whatever it is that raidation and chemo doed to them. Whatever the answer, I am happy for your result and also very relieved to see another survivor. quote]

*****************************************************

I think Connie B. pretty much covered the answers.

Right now, in my situation, I'm being treated for a recurrence after four years of remission. My original SVC site was treated in 2003 and was dramatically reduced and stabilized although it never completely disappeared. I would guess that it may have still been cancerous, or at least prone to be, but just wasn't active.

What did remain decided to get active again this past June and we've been trying to get that under control.

I've had four different chemo mixes with four different results since then. My first chemo was too strong for my system so we changed that and then there were times when the indications shrunk and then increased so the formula was changed again. Right now I'm on Abrazane and in the last month there has been no change in the size of the area being treated. Much better news than more growth. I believe the overall size now is right back where it was in June.

Now, hopefully this mixture or another will result in its further reduction and eventual disappearance or at least another long remission.

Don't be shy about asking questions. As I mentioned before, I wish I'd found this site much earlier myself.

John

[Starr13]

John, thank you so much again. This site is a godsend. I have been under the impression that sclc treatment works like this:

1. There's first line treatment, which works in 90% of people, because small cell is highly chemo sensitive and is easy to kill;

2. 90% of people relapse; there's a second line chemo called topetocan (sp???), which only 20% of people respond to, and those only temporarily. This is where everyone dies.

3. There is no third line treatment (that's why everyone dies with the first relapse).

What you seem to be saying is that there are at least three lines and maybe four - because you've been treated with four differing combinations just for this relapse. Is that correct? Or, are there really only two standard care lines for sclc, and your oncologist is simply very creative and/or aggressive????

Thank you so much if you can clarify for me...

[recce101]

Hi, Starr, welcome to the group!

The fact that you've responded well to the chemo with minimal side effects is VERY encouraging. It indicates to me that your body processes are working pretty much as designed, but for some reason they got a little behind in taking out the trash (Google "apoptosis"). They got some temporary help, and now there's good reason to think they're about ready to start handling the job once again on their own. Hence your oncologist's use of the word "cure," a word that is not thrown around indiscriminately in the cancer world, that's for sure.

Even though the existing facts in your situation are encouraging, I believe you're viewing them in a "half-empty glass" manner, which is very common and normal at the beginning of anyone's cancer journey. Perhaps you could somehow transition to a "half-full glass" approach to the same facts. Easier said than done? Maybe, maybe not. The mind can do some amazing things.

For many, the diagnosis of cancer has served as a wake-up call -- to repair damaged relationships, to live each day to the fullest, to renew friendships and family ties, to help others less fortunate. Some have made such seemingly outlandish statements as "my life didn't truly begin until I was diagnosed with cancer" or "cancer was the best thing that ever happened to me." Bravado and hype? No.

Best wishes and Aloha from one who is much better at giving advice than taking it!

Ned

[twodogs]

Starr,

I don't know too much about when people die because I've been focused om the living part. We're all going to go from something but I figure as long as I'm being treated someone thinks there's a positive result in the works. I'd hate to think I spent all that insurance and Medicare money and the time and effort getting back and forth to treatment for a lost cause.

Ned has stated this very well,"For many, the diagnosis of cancer has served as a wake-up call -- to repair damaged relationships, to live each day to the fullest, to renew friendships and family ties, to help others less fortunate."

When I reflect on what I've learned, especially here, it is more about the strength of the human will and the power of faith than the frailty of the body.

And the ever present possibility that the miracles of modern medicine may release a cure any minute now.

John

[Starr13]

John, thank you, I appreciate your response, but, can you help me understand - I thought there were only two lines for small cell. Your post seems to indicate that there are more, which in turn could mean more options for others including me, in the event of relapse.

Can you help me understand what are the various options, especially if you are on your fourth combination of chemo drugs?

Ned, thank you for your post, you're right, I'm seeing the glass half empty right now. The first doctor to tell me my diagnosis (NOT an oncologist) told me the stats and that everyone dies, no exceptions. Even though intellectually I now understand that he was incorrect, and even though I have spoken personally to many long term survivors, I am having a very difficult time deprogramming this message out of my head. I know I need to get control of this however, because I do firmly believe that our bodies react to the messages from our minds....