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?

Yes
Yes
Yes

You can be cured, you can remain NED and not have a relapse. There have been those who DID relapse and then became cancer-free again and STILL are cancer free (CindyRN)

No one can know the gravity of emotions you are going thru. I do know from reading all these years here that it does get easier...some only get anxious around scan time...others are anxious at every cough and sniffle...while others have minimized that voice in their head which seems to get quieter with the passing of time.

It is a new normal. When you feel like you are drowning in uncertainty and fear...connect with a survivor, read their stories and share/chat with them. That will help to know that there are those who really understand and who ARE survivors of this disease.

that said, I am so happy to read how well you are doing. I am sending positive thoughts and a prayer that it always be so!

Keep posting...venting and expressing your feelings really does help.

Welcome to LCSC. I look forward to getting to know you.

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?

P/S I'm not a lung cancer survivor- although I've had a different cancer. I was a caregiver, and have now been a lung cancer advocate for over 5 years.

I will let the lung survivors chime in here...but I can tell you that I have met quite a few who ARE happy again...so happy in fact that they rarely come here anymore!

it's so overwhelming when you think of the "what ifs" and it's overwhelming when you think of what the future may hold. Take it a moment at a time. Find small joys, set short goals and eventually they will become long-term plans and goals again.

I spoke with a survivor several days ago who is currently going thru a rough patch...when I asked how he was, his answer was "I'm on this side of the grass, so today is a great day!"

That is inspiration.

Keep posting..it really does help and I am sending lots of positive thoughts and prayers your way.

((hug))

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

_________________
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

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

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.

_________________
3/04 - Good friend Claire aged 38 at the time diagnosed with SCLC - limited to the left lung.
4/04- Started chemotherapy (carboplatin with something x 6). Also radiation
10/04 - NED continuing to this day
June 10th - next scans due, Claire is pessimistic
15/6/05 - Still NED !!

My paternal grandmother lived with stage iv NSCLC for 8 years before dying of a non-related illness.

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

_________________
3/2004 Stage 3a-adeno @ 39yrs
3/2004 Left Lung removed, 21 nodes +, paralyzed left vocal cord
3/2006 - New Mets - Spine T12 & Right ischium bone
1/2008 - New Met Spine t10, Possible thyroid

CHEMO
May-Jun 2004 Cisplatin/VP16, 6 days straight every 3 wks, 3 cycles
Jul-Aug 2004 Taxotere 1X every 3 wks, 3 cycles
Sep-April 05 Iressa trial daily
Jan 06-Jan 07 Avastin ev 3 weeks, tarceva daily, zometa ev 6 weeks
Feb 07-Jan 08 Tarceva daily
Jan 08-Present Avastin ev 3 wks + Tarceva Daily

Radiation May-Jun 04 chest 28 days
Feb 06 Spot radiation X 10 days to spine t12 and pelvis (ischium bone)

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

_________________
Age 69 (Now). Diagnosed at 63
Male
50 year smoker (now reformed)
Wife- Marilyn, (nickname Mabel), married 45 years +
4 Children, 8 Grandchildren, 1 Great-grandchild
6/26/03 SVC symptoms
DX as SCLC w/ Inop tumor (approx size of a cigarette pack)
Completed tumor radiation 8/19/03
Completed Chemo 10/31/03
Completed PCI 12/21/03
All follow-up CT's, X-ray's , etc have been progressively improving. Currently no evidence of cancer.
January, '07 - Still have low energy level and still take Epogen for blood count. Back up over 170#.
March '07 Epogen discontinued due to Government tinkering with private medicine. Wonder what's next.
June 7,'07 CAT scan shows new activity in chest area. Started taking Gemzar and Doxcil.
June 13, '07 back into treatment with Carboplatin and CPT-11, after a misfire with Doxcil and Gemzar.
September 5, 2007. No improvement. Switched from CPT-11 & Carboplatin to Taxol & Carboplatin.
October 31, 2007 . Improved but then more progression, switched to Carbplatin & Abraxane instead of Taxol.
11/20/07 Had a bladder infection which cleared up but urinary tract pain didn't. Added Celebrex to my prescriptions and it relieves the pain.
11/29/07 Indications stable - No increase in size.
2/27/08 Allergic Reaction to Carbo. Wait and see.
Reduced schedule for chemo/blood to 1X month.
6/20/08 Added Avastin to Carboplatin and Abraxane.
6/26/08 Summer train wreck began. Pneumonia followed by port faiure, followed by TIA, followed by bacterial blood infection.
10/28/08 Doing much better. Currently on Gemzar, Avastin & Celebrex.


Photo - Relay for Life@ Devils Tower

[

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.

_________________
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.

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.

_________________
09/14/2007 - 48 years old, female, former smoker, sclc ext., mets to liver, svc syndrome

10/20/2007, five days of radiation, two rounds of chemo (carbp/v16), scans, 85% of cancer gone, liver mets gone.

11/24/2007 fourth chemo completed.

12/10/2007 full scans scheduled, will get radiation decision then. Also supposed to have chemo #5 this same week...

12/11/2007 chemo #5 completed; radiation decision will happen after chemo #6. Scans show continued improvement but still not in complete remission - still residual treated stuff (???).

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.



[quote]"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]

_________________
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

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

_________________
[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]

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.

_________________
09/14/2007 - 48 years old, female, former smoker, sclc ext., mets to liver, svc syndrome

10/20/2007, five days of radiation, two rounds of chemo (carbp/v16), scans, 85% of cancer gone, liver mets gone.

11/24/2007 fourth chemo completed.

12/10/2007 full scans scheduled, will get radiation decision then. Also supposed to have chemo #5 this same week...

12/11/2007 chemo #5 completed; radiation decision will happen after chemo #6. Scans show continued improvement but still not in complete remission - still residual treated stuff (???).

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...

_________________
09/14/2007 - 48 years old, female, former smoker, sclc ext., mets to liver, svc syndrome

10/20/2007, five days of radiation, two rounds of chemo (carbp/v16), scans, 85% of cancer gone, liver mets gone.

11/24/2007 fourth chemo completed.

12/10/2007 full scans scheduled, will get radiation decision then. Also supposed to have chemo #5 this same week...

12/11/2007 chemo #5 completed; radiation decision will happen after chemo #6. Scans show continued improvement but still not in complete remission - still residual treated stuff (???).

Starr,

[quote]"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

_________________
Age 69 (Now). Diagnosed at 63
Male
50 year smoker (now reformed)
Wife- Marilyn, (nickname Mabel), married 45 years +
4 Children, 8 Grandchildren, 1 Great-grandchild
6/26/03 SVC symptoms
DX as SCLC w/ Inop tumor (approx size of a cigarette pack)
Completed tumor radiation 8/19/03
Completed Chemo 10/31/03
Completed PCI 12/21/03
All follow-up CT's, X-ray's , etc have been progressively improving. Currently no evidence of cancer.
January, '07 - Still have low energy level and still take Epogen for blood count. Back up over 170#.
March '07 Epogen discontinued due to Government tinkering with private medicine. Wonder what's next.
June 7,'07 CAT scan shows new activity in chest area. Started taking Gemzar and Doxcil.
June 13, '07 back into treatment with Carboplatin and CPT-11, after a misfire with Doxcil and Gemzar.
September 5, 2007. No improvement. Switched from CPT-11 & Carboplatin to Taxol & Carboplatin.
October 31, 2007 . Improved but then more progression, switched to Carbplatin & Abraxane instead of Taxol.
11/20/07 Had a bladder infection which cleared up but urinary tract pain didn't. Added Celebrex to my prescriptions and it relieves the pain.
11/29/07 Indications stable - No increase in size.
2/27/08 Allergic Reaction to Carbo. Wait and see.
Reduced schedule for chemo/blood to 1X month.
6/20/08 Added Avastin to Carboplatin and Abraxane.
6/26/08 Summer train wreck began. Pneumonia followed by port faiure, followed by TIA, followed by bacterial blood infection.
10/28/08 Doing much better. Currently on Gemzar, Avastin & Celebrex.


Photo - Relay for Life@ Devils Tower

[

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...

_________________
09/14/2007 - 48 years old, female, former smoker, sclc ext., mets to liver, svc syndrome

10/20/2007, five days of radiation, two rounds of chemo (carbp/v16), scans, 85% of cancer gone, liver mets gone.

11/24/2007 fourth chemo completed.

12/10/2007 full scans scheduled, will get radiation decision then. Also supposed to have chemo #5 this same week...

12/11/2007 chemo #5 completed; radiation decision will happen after chemo #6. Scans show continued improvement but still not in complete remission - still residual treated stuff (???).

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

_________________
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.

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

_________________
Age 69 (Now). Diagnosed at 63
Male
50 year smoker (now reformed)
Wife- Marilyn, (nickname Mabel), married 45 years +
4 Children, 8 Grandchildren, 1 Great-grandchild
6/26/03 SVC symptoms
DX as SCLC w/ Inop tumor (approx size of a cigarette pack)
Completed tumor radiation 8/19/03
Completed Chemo 10/31/03
Completed PCI 12/21/03
All follow-up CT's, X-ray's , etc have been progressively improving. Currently no evidence of cancer.
January, '07 - Still have low energy level and still take Epogen for blood count. Back up over 170#.
March '07 Epogen discontinued due to Government tinkering with private medicine. Wonder what's next.
June 7,'07 CAT scan shows new activity in chest area. Started taking Gemzar and Doxcil.
June 13, '07 back into treatment with Carboplatin and CPT-11, after a misfire with Doxcil and Gemzar.
September 5, 2007. No improvement. Switched from CPT-11 & Carboplatin to Taxol & Carboplatin.
October 31, 2007 . Improved but then more progression, switched to Carbplatin & Abraxane instead of Taxol.
11/20/07 Had a bladder infection which cleared up but urinary tract pain didn't. Added Celebrex to my prescriptions and it relieves the pain.
11/29/07 Indications stable - No increase in size.
2/27/08 Allergic Reaction to Carbo. Wait and see.
Reduced schedule for chemo/blood to 1X month.
6/20/08 Added Avastin to Carboplatin and Abraxane.
6/26/08 Summer train wreck began. Pneumonia followed by port faiure, followed by TIA, followed by bacterial blood infection.
10/28/08 Doing much better. Currently on Gemzar, Avastin & Celebrex.


Photo - Relay for Life@ Devils Tower

[

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....

_________________
09/14/2007 - 48 years old, female, former smoker, sclc ext., mets to liver, svc syndrome

10/20/2007, five days of radiation, two rounds of chemo (carbp/v16), scans, 85% of cancer gone, liver mets gone.

11/24/2007 fourth chemo completed.

12/10/2007 full scans scheduled, will get radiation decision then. Also supposed to have chemo #5 this same week...

12/11/2007 chemo #5 completed; radiation decision will happen after chemo #6. Scans show continued improvement but still not in complete remission - still residual treated stuff (???).