another place for survivors?

• By bavarianwench
• Posted September 12, 2009 at 1:45 pm
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Hi there,
My Mother was diagnosed with extensive sclc, mets to liver, eight months ago. She just returned from a trip to Europe and has tolerated the chemo well. Her hair is just growing back in, just as it was prior...curly and salt & pepper.I am sorry to hear of your Mother's sclc.
Your book sounds like such a cool idea!
best wishes, Veronika

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• By DutifulDaughter
• Posted September 12, 2009 at 2:04 pm
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I made my dad a book of photos on teh website snapfish with pictures of his grandson. It was a flip book he could put in his pocket and show to nurses or whoever he wanted when he is in the hospital. He loved it and i thin it helped him remember what he is fighting for.

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• By PrayzGod
• Posted September 12, 2009 at 2:41 pm
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thank you so much for your response. It means a lot. How was she feeling before hand. My mom feels terrible now. She has had pneumonia since July. She has had a partially collapsed lung since August. Everything hurts. She can't bend over, shes tired. She just wants to get started and she feels like all the drs. have done is goof off since August 3rd when they spotted the mass. She has an aggressive fast growing cancer but yet everyone is moving in slow motion. :(

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• By bavarianwench
• Posted September 12, 2009 at 3:01 pm
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She was having a lot of pain and the abdomen was swollen due to many liver mets. The upright sitting positon was intolerable and had to maintain the reclined position.
My mother had three opinions and each had their own regiment of testings and so there were three different waitings for test results from the 3 differebt Drs. It was horrible! The first one said it was liver cancer and then the second one found out that the primary was lung cancer, with liver mets! Then the third , we thought he could do the micro chemo beads where it is inserted right into the liver.. i think it's called embolization. Well, the guy, he was down right rude and insulting to my mother!! I wish i had been there... but my sister was instead. She did tell him off.
I so wish you could go to FoxChase.
I will find out my Mom's Dr.s name, she is a woman from Hungary. My mother adores her. Maybe you can call her and she could suggest somthing or another Dr,?

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• By bavarianwench
• Posted September 12, 2009 at 3:05 pm
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Hello again, Just read that you are in May's Landing.. I'm in EHT. We are neighbors!

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• By PrayzGod
• Posted September 12, 2009 at 3:13 pm
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NO WAY! I am actually in Dorothy. Is your mom close too? Would she be interested in connecting with my mom. I would love to find someone who my mom can talk to who is going through this. I know she is hiding her emotions to protect me.

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• By dusteerose
• Posted September 12, 2009 at 3:15 pm
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Hi,

I have been living with extensive sclc for a year now. I am on chemo again. I don't plan on dying. Print the surviver stories for her but they won't just be tales of survivers. The people here will become some of her best friends and we will be surviving with her forever.

Jen

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• By cuddles53
• Posted September 13, 2009 at 12:30 am
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My husband has died now and has been gone for a few years, but he was diagnosed with small cell extensive stage and given just 3 short months to live. He never once believed he would die from cancer and was certain he was going to beat it, It became almost a game with him. He would not give in, and just kept getting treatment after treatment. Finally he passed his 5th year, and he still kept after the doctor to declare him cured, Finally after 6 years they told him he was cured of it. So there is a lot of hope with small cell, it does respond very well to treatment, the problem with it, is that it is very aggressive and comes back with a vengeance, but... there is hope today and even more so than when my husband had his cancer, today there are maintenance therapy chemo drugs to keep a patient on if there blood work is good, and thier white count is good and platelets are good. So life can be much longer than he even had. He died of complications from some of his treatments he had, not cancer, so this is good news for you, as you can see we can not beleive a doctor saying how much time we have left, they simply do not know, the only one who knows is God and he isn't talking. so live life to its fullest you will more than likely be around a good long time, with all of the cures that are coming out shortly, i think in a few more months it is going to be easier than it is now.
God bless Sandy

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• By 8wall
• Posted September 13, 2009 at 7:38 am
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Hi There
1 Year ago pretty much to the week,I was put through tests for lung cancer..This was actually started through my Cardiologist.Yes they determined I had lung cancer..I beleive intitially while I was going through the tests (Sloan Kettering Memorial Cancer Center NYC),They beleived it was stage 3????Which ment nothing to me at the time..I just peeked at the DR's sheet!..
Well the Dr.had my wife and I in his office to discuss
the results of the tests!Yes I indeed had lung cancer..
I was Diagnosed with Extensive Stage Small Cell Lung
Cancer!!!Now all the questions and this 1 year (So Far)
battle had started!!
First let me say..This has been a battle..there have been ups and downs..Of course as the year has progressed the disease has progressed somewhat..
I am very very positive..I started of course,I guess us Lung Cancer guys would say,with chemo..6 sessions,only made it through 5..then I had blood transfussions a weekend in the hospital to bounce back!Ha, what a time it was.But by now we where past a really great X-mas and had planned time to take a break for about a month or so before we hit the chemo again..
My wife and I had made plans to take a month with my 19 & 21 year old Sons..Plus add my Sister & Husband ,and add my Brother and Wife for a weekeach of it.To join us for a great Time on the Beach outside Tampa Bay Area!.Pool in the back yard,Plenty of Spring Training Baseball,BBQ,Just a fantastic Month !!!Yes indeed it was fantastic for all of us!!And when we returned we hit opening weekend
at the Brand New Yankee Stadium!!!
Ok enough..Of course when I returned My Ex Small Cell Lung Cancer had progressed a little bit...
But it was still far less than it was before the Chemo..
So we now looked and hit a good Second line Chemo..
This I have been (Was) on til August for 5 treatments!
then all of a sudden,just like that! one morning I was very disorientated.Couldn't gather my thoughts and really think straight!!
I went into ,actually a local cancer center,in Kingston New York close by.Well I of course by all this time was aware that it could move to my Brain,,And Indeed it has!!
So,No need to worry,Ha!After meeting with (the top guy,I only see top guys!HA)and having a scan to my noggin.We discussed a plan... all agreed..AND FOLLOWED IT!
Because it Metastisized to my brain,like EX Small Lung Cancer Usually does..We did I think it was 12 or 13 Radiation Treatments ,which I finished the last on Thursday!
Now to tell youthe truth.. it was really very scary the first few days!..Gosh I just lost my train of thought consistantly!I had no Idea what was going on!
Very Upsetting,,As Time and treatments progressed..I seem to be able to manage that a bit better..not as scarry!!!So I feel a bit better (Much better than the first 2 days!) but still fight it..I am only on a steroid pill once a day now..Tomorrow I go to NYC to tackle the Cancer that is below my Noggin..You see it's 2 different areas..2 different methods od treatments..
They have a clinical trial they want to discuss with us which is a treatment in form of a pill..So We'll head into Manhattan to talk about treatment and see whats up..Then another follow up later in the week to plan our follow up treatment for my noggin again..
So this has been 1 year to the week..All is positive!!
All has run pretty smoothly so far..Of course there are ups and downs but there are bound to be..I really can tell you that family love and support is just a tremendous tool that is required!!!Ha,not kidding either!As well as it's not easy at all sometimes.It can really suck!I am very fortunate,,It's been like cats and mice at times..But ya gotta get through it!..
So thats pretty much it after 1 year..Now the next year
I can't tell you yet,,but we'll tackle it just like the last one!!
Just one more thing!!!!!!!!

My two boys are away for the weekend in Ottawa Canada,back tomorrow,,,
And WE HAVE JUST AWSOME SEATS 8 ROWS UP FROM THE FIELD BETWEEN 3RD BASE AND THE FOUL POLE AT THIS AFTERNOONS YANKEES VS ORIOLES BALL GAME AT THE NEW YANKEE STADIUM!!!!
It;s not all Bad!
God Bless You
Dan
us74green@aol.com
So ..

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• By bavarianwench
• Posted September 13, 2009 at 8:03 am
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Hi there,My Mom lives in Valley Forge, Penna. and she wouldn
t be great on the phone as she is a bit hard of hearing,,also she doesn't do the internet...
Hope your Sunday is a good one.

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• By Reads_Too_Much
• Posted September 13, 2009 at 10:53 am
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Hi, PrayzGod,

Someone (Sandy?) on this board mentioned that Kara Kennedy (Senator Ted Kennedy's daughter) survived SCLC.

I bought a book written by a SCLC survivor called, How to Survive Lung Cancer - A Practical 12-Step Plan by Michael Lloyd (Paperback - Nov 29, 2007) that might encourage your mom.

Available by special order, or from Half.com
http://product.half.ebay.com/_W0QQtgZinfoQQprZ65730577

or Amazon.com
http://www.amazon.com/How-Survive-Lung-Cancer-Practical/dp/1435704711/ref=s r_1_8?ie=UTF8&s=books&qid=1252853068&sr=1-8

"Voices in Lung Cancer" is very good. I can't remember if it has survivor stories about SCLC or not.

Good wishes for your mother's recovery!

Hang in there,
Reads_Too_Much
----------------------------------------------------
Mom to 2 very young, active tots
Spouse to NSCLC Never-Smoker with Adenocarcinoma and Squamous Cell Carcinoma
dx May 2009, and treated with chemotherapy only.

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• By PreciousFox15
• Posted September 27, 2009 at 10:30 pm
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Sandy,

I am so sorry to hear about your husband. I am new here and glad the ACS gave me this site.

My husband (45) was diagnosed with EX-SCLC the end of last month.

He was told he only has 18-24 months to live. He is ok with that (I'm not, but he is a realist). I am going to fight this tooth and nail. I have read everything I can get my hands on about SCLC.

I am so glad that I have found a site where there are SCLC survivors.

Now I have even more hope for my husband because of your reply.

Thank you so much Sandy,

Sherry :-)

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• By jmichelle
• Posted September 27, 2009 at 11:30 pm
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Go to the upper right hand corner and type in SCLC or SCLC survivors in the "find it" box. There are many threads there of previous postings one in particular where several long term SCLC survivors posted comments. I printed them out and gave them to my Dad!

Good luck to you and your Mom!

Jodi

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