My mom is undergoing surgery for her brain met tomorrow and go figure I can't sleep. She can't get over the statistics and feels like she's fighting a losing battle. So I wanted to give her some encouraging stories while she recoups and starts chemo. Has anyone gone into remission, survived an extended period or have any hopeful stories I can share with her?

Here's a post from a 5-year SCLC survivor which is a great example:

http://lungevity.org/l_community/viewtopic.php?t=18395

I've seen posts from other long-term SCLC members, and some of them should respond before long.

Good luck and Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

Paper,
Check out my dad's story! It is one I LOVE to share...though we were lucky that dad's was not extensive. However, I do know that Don from Texas had a brain met (if I remember correctly) and did cyberknife.

There is just SO MUCH hope out there.

Give mom my prayers,
Jen

_________________
[size=75]Loving Daughter, with three siblings, praying for a Dad with SCLC, superior vena cava syndrome.

3/16/06 DX Mass and/or adenopathy within the right hilum..consistent with bronchogenic carcinoma. May also be subcarinal adenopathy. Small right pleural effusion.
3/17/06 MRI head with/out contrast. Biopsi-lung, right middle lobe bronchus. Small Cell Carcinoma of the right lung with SVC syndrome
3/21/06 Bone scan. No evidence for skeletal metastases
3/21/06 Etoposide and Carboplatin chemotherapy (3 days)
4/12/06 Chest XRay - Obvious shrinking of tumor
4/12/06 Etoposide and Carboplatin (3 days)
5/2/06 CScan - again, obvious shrinking of tumor
5/5/06 Meet with Radiologist to determine radiology plan
5/9/06 Day one of Radiation
5/10/06 Chemo (?) (3 days)
6/4/06 In the middle of radiation, going EXTREMELY well, aside from sore eating, and tired, tired, tired. Dad is hopeful, sure that he is coughing up tumor every day, and spirited. Thank you God!
6/18/06 Went into local hospital for infusion. Chest X for possible pneumonia.
6/20/-6 Went to local hospital for infustion. DX with pneumonia in both lungs. O2 levels low, and irregular heart beat. He does not feel heart beating 140 and above. Meds for regulation not working. Made it to Mayo 6/25...back in the hands of the amazing!
6/29 Radiation Graduation! Dad is now home, and regaining strength every day. He is tired, tired, tired, but again, getting stronger every day. Will return to Mayo on 7/30 for all new tests.
7/30 "There is nothing in your noggin but a brain, Keith!" Amazing words to hear! "I would give your chest a clean bill."
8/1 "Keith, you are in remission." We don't consider a cure until you are clear for five years.
8/7 Began 15 rounds PCI brain radiation treatments. This was a difficult decision to make as we were given the side affects, and quite honestly it does sound scary. However, most all SCLC survivors appear to have some form of brain radiation at some time throughout their treatments. Dad figures that mom does the money books, organizes the meds, and keeps the house going already, so what the heck. "I don't want to die from cancer," he says!

August 25, 2006 Mom and Dad return after PCI. Dad feels great, has a tan, bald head, and got out onto the boat on day 1 of his return! Thank you God!

11/29/06 3 month Check Up...Still in remission. Lung scarring from radiation occuring. Dad feels great. Depression and low activity are going away!

2/25/07 Another check up shows no progression...however a slight pleural effusion that has grown since November. Could be one of three things...1. Infection 2. Scar Tissue 3. Cancer. Must go back to Mayo next week to have it drained and checked.

3/1/07 Drained pleural effusion yesterday. However, when they got in there, there wasn't enough fluid to drain and check...this means it probably wasn't cancer, and more than likely was the tail end of some kind of infection. She decides she wants him back in two months instead of three, just to be safe. Heart doc gives dad the clean bill of health. Go home, enjoy life!

5/11/07 Dad had a standard chest CT, which showed nothing new. He feels great and again was given a clean bill! Yeah! Doc will do a "big" check-up in August...complete with chest CT, bone scan, and brain scan...all because at that point he will be one year in remission! Yeah...I pray every day for these years to be granted!
8/21/07 Dad had a full body scan yesterday and results today were very "boring!" We LOVE boring. There was one nodule, in the lung area, that she could see, but it is smaller than small, and leaves no reason to be concerned. Dad will return for a check-up after Christmas. When mom said, "So, do we not need to be worried anymore" she answered with, "Your new normal will be that you are always worried." Yuck...but oh so true. Thank you God for the gift of healing, and may you continue with that wonderful gift. I pray in thanksgiving.

1/21/08 "I am going to call you my miracle man! Keith, I still don't see any evidence of cancer in your body." Wow! Blessed again!

5/19/08 "Keith there is no change. I see no evidence of any cancer." Wow! We are so blessed to be given another clean report. "Every day is a gift," my dad said. Isn't that the truth!

Sept. 08 Still Cancer Free

4/8/09 All evidence of the small cell is still gone. She believes Dad is cured. However, a dot on the CT almost a year ago has turned into an eraser sizes spot. This could just be a product of his recent bronchitis or could be when he breathed during the scan. She DOES NOT think we have anything to worry about. Scans will be in 3 months now, instead of 6 months...I am happy for that!

7/20/09 CT shows growth in spot on opposite lung than original cancer. They do not want to leave it alone. Will have PET and surgical consult next week with the hopes for simple removal.

8/2009 Removed spot. Biopsy showed trace of NSCLC. No SCLC found.

11/2009 All clear
3/2010 All clear
7/2010 All clear
11/2010 All clear. We really are so very blessed to continue to be cancer free. Thank you God.
8/23/11 - Still clear. Thank God!



Picture at left is my husband and I, October 2007. Below is Dad crossing the line during the survivor lap at the Relay. The other pic is just one of my faves!

[img]http://lchelp.org/picfiles/jen2.jpg[/img][img]http://lchelp.org/picfiles/ztweb3.jpg[/img]
[/size]

There are TWO SIDES to Stats and there's NO REASON She can't be on the SURVIVING SIDE!! I know of long term SCLC Survivors. Two of them are in my Lung Cancer Support Group. One is an 8 year and the other is a 7 year. They are both doing VERY WELL and they are CANCER FREE TODAY!!

DO NOT read the Stats. They only pull us down and the Stats are 5 to 7 years behind anyway.

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

I think I replied to another post, but please read
my husband's profile. Alan is a 3 year survivor of
ext SCLC also with brain met.

_________________
Debbie

Husband Alan 58 dx small cell LC
1/10/05 chest x-ray shows 7 x 7 cm mass right hilar region
1/12/05 broncscopy confirms small cell L.c w/ superior vena cava syndrome
1/12/5 1st radiation treatment
1/18/05 meet with medical oncologist
1/20/05 1st chemo treatment cisplatin-CPT 11
1/21/05 brain, bone, adomen scans all clear
1/27/05 2nd chemo treatment CPT-11
1/31/05 Alan admitted to hospital,high fever,
infections
2/5/05 released from hospital
2/13/05 Alan admitted to hospital in a sever
altered state, cause unknown, brain scan clear
2/15/05 Alan returns to reality
2/17-18-19 new chemo given in hospital
Cisplatin VPT 16. this would turn out to be
Alan's last chemo treatment
2/20 released from hospital
2/23 re-admitted due to recurrance of altered
state. dx organic psycosis caused by Decadron
2/26/05 platlette transfusion then released
from hospital
3/1/05 follow up appointment with oncologist,
something not right Alan rushed across the
street re-admitted back into the hospital
11:00am Bilateral pneumonia
3/1/05 7:00pm Alan condition declining. 10
liter oxygen, BP very low, heart rate too high
Alan now taken to ICU I am asked what life
saving measures I want hospital to take
3/2/05 Alan made it through the night.
3/5/05 6:00am hospital calls me at home,
Alan crashing again, need to get there
asap.may have to go on vent.
3/5/05 emergancey broncoscopy to remove
fluid from Alan's lungs, keeps him off vent still not out of the woods
3/11/05 confirmed Alan has a blood infection.
now VRE infectous disease specialist called in
3/12/05 2 pints of blood
3/16/05 blood clot found behing alan's left knee
3/17/05 chest tube put in
3/18/05 Alan misses his daughter's wedding
3/19/05 Alan's birthday, finally out of ICU and
transfered to cancer ward
3/22/05 Chest CT 4 new spots in left lung
3/24/05 broncoscopy to biopsy new spots
3/31/05 Alan finally home on oxygen 24/7
4/18/05 Alan's case brought before tumor board
4/22/05 follow up chest CT no changes in new spots
4/27/05 appointment with oncologist Alan still
too weak to try chemo. discontinued at this time. Tumor is shrinking
5/9/05 Alan starts 35 chest radiation treatments
6/3/05 tumor still shrinking blood work getting better
6/28/05 last radiation treatment oxygen only at night now
6/30/05 appt with med onc, Alan having
headaches brain MRI ordered
7/7/05 Brain MRI completed
7/12/05 confirmed Brain mets. 3.0 x 3.5cm
tumor in the right cerebellar hempisphere
w/sever edema crushing brain stem
7/12/05 start WBR Alan unable to take decadron
7/14/05 Alan in emergancy room dehydrated
from vomiting caused by brain swelling
8/1/05 I decide to take FML and spend time with Alan
8/15/05 Alan makes remarkable recovery and
we leave for 3 week vacation
9/1/05 last radiation treatment to brain tumor
9/28/05 follow up brain MRI no sign of tumor!!!!
11/11/05 Chest CT 1 spot has increased from
1.3cm back to 3.0cm watch and wait
1/10/06 made it 1 year, Brain MRI
show no further cancer
3/10/06 CT Scan Lungs Stable
6/20/06 CT Scan Lungs new 3cm mass
6/22/06 PET Scan negative. watch and wait.
7/18/06 Needle biopsy done, waiting results
7/21/06 get the call NED
1/02/07 confirmed cancer in the right supraclavicular lymph node
1/03/07 Start Radiation treatments
2/27/07 Last Radiation treatment!!
6/4/07 NED once again!!!
12/20/07 cancer back in several lymph nodes. Chemo to start 12/26/07
01/18/08 Blood counts low, check into hospital for transfusion. Chemo delayed until counts come back up
02/08/08 Another blood transfusion
02/15/08 Blood counts back up continue chemo
02/29/08 Overnight stay in hospital for another blood transfusion
03/12/08 Thoracentesis 600cc of fluid drained from right lung.
03/22/08 Admitted to hospital for another blood transfusion
04/18/08 Admitted for 5th blood transfusion since Jan.
06/28/08 4:00pm Alan goes home to God.

Thanks to everyone who responded so far. It just seems so crazy to me the way it spreads and spreads. I'm just in week three and nothing new has come up yet. The surgery went really well she is awake and attentive. They said they will do some targeted radiation after and start chemo in ten days. Is there just no chance at all that we remove the brain met do the chemo and the tumor shrinks? It seems like a constant battle.

Delighted that the surgery went well! Your mom is off to a good start, and now we can look for and expect shrinkage when she starts the chemo. But yes, it will seem like a constant battle, or as some of us prefer to say, the "new normal."

Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

Paperback - I was where you are almost one year ago and I can tell you that besides some fatigue and hair loss from the chemotherapy..My Mom has felt great for months now and has been on the go, go, go.

I too researched up and down and felt hopeless until I found this and one other site that has survivors that helped me out.

I have found talking to folks that have SCLC or Caregivers of patients my MOOD changed as well as the rest of my family.

Please remember this can be beat....

My Mom goes in this afternoon to set up her radiation treatments to her lung and she is determined to beat this!!

Stay positive and eat healthy. My Moms doctor said her diet from day one has played a big role in her not losing weight and feeling good throughout chemo and radiation......

_________________
3/24 call from my Dad about "shadow" on Moms CXR
3/26 CT scan
3/28 Called docs office and they said if it was really bad we would have known by now. Sense of relief...for around 2 hours
3/28 Call from docs office to meet with doctor the next day
3/29 GP verifies that it is cancer and orders bronchoscopy for April 2
MOM STAYING POSITIVE thru all of this
4/2 Parents 47th Anniversary and bronchoscopy
4/5 Call from Pulmonologist verifies SCLC - set appt to meet with radiologist on Monday
4/9 Rad docs say that CT shows no spreading outside the lung to other organs and talk about chemo plan and radiation.
4/10 Brain Scan to make sure "empty"
TODAY 4/13 - waiting for results
MOM SO positive as well as rest of family - eating healthy etc
Schedule to meet Radiologist at Pluta Cancer Center on Monday @ 2:30 to hopefully start treatments ASAP
April-May 2007 Scan comes back positive for Met to Brain and 16 rounds of radiation follow
3 Rounds of chemo thru summer 2007
August 07 - tumor almost gone and Mom requests one more round of chemo
September CT looks good, tumor just about gone
November 07 Xray looks good, nothing new
WE are hopeful
Jan 9 08 - CT (Mom gets sick on table from dye)
Jan 15 results say that she has a new tumor in the same lung - about the size of a thumbnail - rescan on Feb 11
Jan 23 - Mom has been coughing up blood - doctor not too worried about it...
Jan 27 - No more bleeding...
Feb 11 - CT
Feb 14 - Results show collapsed lung and Mom goes in Feb 15 to set up radiation treatment.
Feb 15 - Meet with radiologist and plan of action is CT on 2/18 and to start radiation next week with 5 weeks of treatment. Lung is not totally collapsed.
Feb 18 - CT with no contrast or drink, Nurse from Pluta meets us there
Feb 19 - Go in for simulation for radiation treatments and more x-rays - they mark THREE areas on her chest.
Feb 20 - Final set of x-rays today at 2:30 and start radiation treatments on Feb 21 for 25 days at 8:15 every morning.
March 23 - Family Easter Dinner - Mom looks great
March 26 - Radiation therapy to the lung is over and Mom is very happy.
During treatments - No side effects or problems eating food - tired some days thats about it
April 4-8 - Mom is getting bad headaches and goes to meet with Her doctor at Pluta today -April 8


"We Often Have To Be Our Own Advocates."

I am one of the ones Connie spoke of I think.

I was diag in Feb 2001 and still going. It relapsed in 2003 but made it thru that bout too.

Read the profile below.

Tell her there some of us!
Cindy

_________________
[size=10:07600f51db]'I can do all things thru Christ who strengthens me' (and He does!)

I am a 50 yo (DOB 10/13/56), wife, mom of 3, ER nurse (semi-retired).
I was 44 and diagnosed 2/2001 SCLC Extensive R Lung, mediastinal area, vessels of the heart, and L adrenal gland, Cisplatin and Camptosar (Irenotecan) x 9 mos.
Remission 1 yr.
June 2002-youngest got her drivers lis. OH NO! 1st Milestone.
Relapsed in 2/2003, tumor in L lung-6 wks radiation and chemo- carboplatin, VP-16 for 6 mos. also in Feb. 2003 I fell and broke R leg-surgically repaired.
Last chemo treatment Aug. 2003.
Sept 2003 son got married! Another milestone met!
March 2004 pericardial effusion.
Dec. 2004 pericardial effusion still present but smaller and stable
Feb. 2005-I made it--4 years!!!!( since the day I was diagnosed, YEAH!)
Remission TWO YEARS (Aug. 2005)!!!!!!!!!! This time
August 1, 2005 CT scan shows NED and MRI confirms I am still empty headed!
Nov. 2005-all scans STILL NED!!
FEB. 2006- 5 YEARS SINCE DIAGNOSIS!!!
March 2006-All scans still NED
July 2006-All scans NED
Aug. 2006-3 years no chemo-oh yeah!
Dec 2 2006 Middle daughter was married!! Another milestone!
Oct. 2006-All scans NED
Feb 2007-All still NED !!6 YEARS since orig diagnosis!!
June 2007-NED NED NED!!
June 2007 Youngest daughter turned 21!! She was 14 at my diag!
August 2007-4 years since last chemo!!
April 2008-still clean, almost 5 yrs since last chemo, Praise God!

Pic- CindyRN and KatieB at the 2007 Bash
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My Mom is going on 20 months since DX with Ext Small cell-mets to liver,adrenal, brain and is still going strong!! There are survivors and our Moms can be one of the 5%

Dar

_________________
My Mom
5/1/46-6/20/08

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight

Jake