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 Post subject: LUNG CANCER SURVIVOR
PostPosted: Wed Apr 13, 2011 11:08 am 
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Joined: Wed Jan 26, 2011 2:12 pm
Posts: 1
LUNG CANCER
A REMARKABLE JOURNEY

ROBERT LOWE a UK long term double survivor, patients advocate and a founder member of the local Stobhill Lung Cancer Support Group

A lung cancer prognosis is a prediction which is based on test results, scans, medical experience, and average stats. They are an educated guesstimate, a forecast, but not set in stone, there will always be some variations and occasional exceptions. Studies confirm that positive patients do much better than negative ones, may my personal experiences inspire hope and provide motivation for others.

In 1993, I was 53 yrs old, very happily married with two children, and had an enduring persistent cough, and was belatedly diagnosed with advanced small cell terminal lung cancer and told I had only 2 to 3 months left at max. My consultant asked if I wanted to consider life prolonging treatment and my immediate response was no! Extending the time that family and friends would watch my demise, with no hope of a cure, wasn’t an option. Then, as I was discussing things with my wife and carefully selecting my words to try and tactfully explain my decision, a thought just came out of the blue. As this cancer is definitely terminal, if I refuse treatment, I will be remembered by family and friends as a quitter. On the other hand, if I ask for the strongest treatments available then that would be a very different scenario; I would be remembered by my family as having tried my best. I went back and asked what the strongest available treatments were; I was told that with the strongest chemotherapy there was a good chance that the chemo would kill me before the cancer did. Great, just what I was looking for, I get everything over quickly, and everyone remembers me as fighting right to the very last, a win, win. Okay, I said to my consultant, as I have nothing to lose, hit me with the strongest of everything.

The chemo was to be fed intravenously and administered in 6 doses. I was whipped into hospital right away and on starting the chemo, I was immediately bed bound, and just lay on my side continuously vomiting in to a sick bowl. After each dose, I was asked if I wanted another, after the fourth, my body was hairless, skeletal and had absolutely nothing left, so I stopped it. I was deteriorating fast and was quickly moved to a side room on my own. My wife told me later that she was called on 3 occasions and told to come quick as pos as I was slipping away, but on each occasion, somehow, my emaciated body pulled through. After the chemo, I gradually improved. Then came radiation and again I had to cut the number of treatments short, but was surprisingly allowed home at weekends. Ever so slowly, my strength continued to grow, and 1 year after treatment stopped, I was back at work.

In 2007, started coughing again, getting progressively weaker, and was diagnosed with non small cell lung cancer. I couldn’t get chemo or radiation as I had it previously, and as the tumour was tucked in close to my heart, the medical team decided that surgery would be at best speculative and complicated, and I was also pre-judged as probably too old at 67yrs to survive it. After many, many tests, scans and a deep discussion with my sympathetic surgeon, I fought my corner and received surgery. Now, I am doubly fortunate and forever grateful to be still enjoying a pretty good quality of life in my retirement.

The speed, strength, and length of both my recoveries bemuse the medical profession, and the moral of my story is that while there is some life, there is always hope. Twice I have been very fortunate to deny the deadly lung cancer beast, and twice it has been by taking a positive stance. If I had to pass on any comforting advice, it would be that with the modern emphasis on early detection, and improving treatments, the outlook for the newly diagnosed will continue to be more and more optimistic than mine ever was.

LUNG CANCER HAS NO BOUNDARIES

DO GIVE IT YOUR BEST SHOT @ GOOD LUCK TO EVERYONE

http://stobhilllungcancersupportgroup.weebly.com/


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Wed Apr 13, 2011 11:28 am 
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Joined: Sat Feb 20, 2010 5:53 am
Posts: 1316
Location: Airdrie north Lanarkshire
Hi Robert,
Welcome,Boy you took your time in getting here?,better late than never.I am sure everyone here is going to be impressed with your story,certainly bucked me up no end.Everyone here are so supportive and friendly, bettcha you are going to wish you arrived sooner.See you on Friday at Roy Castle's -Our mutal friend,Susan Christie is leaving,to take up a Teaching post in Nepal of all places,so Robert,Sheila and I are going to present her with a wee prezzie,a token of the regard we held her in ,for all the hard work she has put in advancing the Lung Cancer cause in myriad of ways,she has been a real heroine to me personally in helping me to become a more effective advocate for Lung Cancer.
Robert we will need to encourage Sheila for a visit here,what thinks you?

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Wed Apr 13, 2011 11:45 am 
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Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Hi Robert.

Welcome here. Your story is inspiring and amazing. Good for you and congrats on fighting a strong battle and winning it!

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Thu Apr 14, 2011 3:08 am 
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Joined: Tue Mar 15, 2011 8:39 am
Posts: 44
Thank you, Robert, for posting your story. As a person with extensive SCLC, I cannot tell you how much it helps me keep a positive attitude when I read about someone that has survived this beast! When I was first diagnosed last month, I had a hard time finding survivors of SCLC until I found this site.

Karen

_________________
2/8/11 Upper respiratory infection just like all my co workers.
2/16/11 Saw PCP and reported just not getting better, also had a weird "click" at the end of each inspiration.
2/27/11 Developed extreme pain in lower back, bilateral hips, and bilateral knees.
3/2/11 Went back to PCP and reported pain. She ordered xrays of back etc. I asked for CXR. Found upper right lobe collapsed. Doctor ordered CT chest. Dx with SCLC, extensive with mets through out boney thorax and brain.
3/3/11 Bronch confirms diagnosis. Chemo started with cistplatin and etoposide.
3/9/11 Discharged from hospital wondering "what the heck just happened?"
4/18/11- Scans to evaluate first 2 rounds of chemo. Good news! All tumors have shrunk or are no longer measurable! Continue with chemo regime. Next scans due May 31.
5/31/11 -Scans look good except brain mets slightly increased. Will start WBR.
6/9-6/28/11 -WBR. Back working full time.
7/11/11 -CT shows mild progression right upper lung.
8/1/11- CT shows right bronchus occluded again but no sign of tumor around it.
8/3/11- Started 2nd line chemo. Topotecan/Taxol. 3 days of infusions every 21 days. Had 2 rounds. Didn't work.
9/2011 admitted with potassium dangerously low! Decided to move home to IN so that my family can more easily help me with day to day living. Have new oncologist and am very happy with him! I can't help but feel that I have not been followed very closely, and that's a scarey feeling.
9/16/11 Started Gemcitabine weekly for 3 weeks, 1 week off.


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Thu Apr 14, 2011 8:14 am 
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Joined: Fri Sep 19, 2008 6:08 pm
Posts: 1422
Location: Crowley, Texas
Welcome, Robert. Great story! I hope we'll be hearing lots more from you.

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Wed Apr 20, 2011 1:14 pm 
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Director of Support & Advocacy, LUNGevity
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Joined: Thu Jan 09, 2003 11:09 am
Posts: 14986
Location: Texas
WOW!
Welcome!


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 Post subject: Re: LUNG CANCER SURVIVOR
PostPosted: Mon May 09, 2011 10:48 am 
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Joined: Mon May 09, 2011 10:32 am
Posts: 2
thank you for your post. I was just told I have lung cancer start treament chmo wed. small cell. I'm 55 yrs old and do not want to go yet. I have three new granddaughters to love. My girls and husband are my support and great. I'm scared but want to fight. we need my support fro lung cancer. I was told I had 1 maybe 2 yrs. I thought and asked the dr if I did not take treatment what then. He said I had 3 months. so I am taking treatments.

thanks for you support and post it helps.

sharon


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