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 Post subject: My story
PostPosted: Thu Mar 17, 2011 2:25 pm 
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Joined: Tue Mar 15, 2011 8:39 am
Posts: 44
I had an upper respiratory infection in early February, 2011. Over the last 1.5 years, my allergies and asthma have gotten worse. When I finally went to my primary care office in late February, she restarted more allergy meds. I did complain at that time of a clicking sound at end inspiration. It was a mystery to her as it was to me. She set me up to see her in follow up on March 2nd. I ended up needing a steroid 'burst' to get my asthma in check. I finished the steroids on Sunday, February 27th, and by that night, my lower back, bilateral hips, and bilateral knees were killing me! I tried ice, heat, icy hot, advil, nothing would take this pain away. I went in on that Wednesday, March 2nd, and told the PCP about this extreme pain I was in. She thought it was something that had gone systemic and recommended xrays then follow up with somone in the rheumatology department. Just as an after thought,I told her that my breathing still wasn't quite right. She decided to get a chest xray.

Before I could drive from the PCP office to my office, she called me and told me my right upper lobe was collapsed and I needed a CT scan of the chest. I complettd this as soon as I got to my office on the hospital campus. I sat at my desk looking at my other images that had been completed earlier. Back, hips, and knees just showed degenerative changes. I thought, I'm 46, okay I have arthritis. Within an hour my PCP called asking me to come back to her offie to discuss the CT scan. I refreshd my screen and my CT report was there in front of me. I went into shock at that point and have not returned to normal since.

The CT showed a large right hilar mass consistent with malignancy with multiple lytic lesions suggestive of extensive mets. I was directly admitted my the hospital then sent for MRI brain and CT abdomen pelvis. It would seem that I have lots of little “sparkles” that lit up over my entire chest and brain. I have spots on my liver and kidneys and right femur. HOW DID THIS HAPPEN SO QUICKLY?! I had my first round of chemo that weekend.

My life has turned into BC (before cancer) and AD (after diagnosis). I still am trying to figure out what the heck has just happened to me? Not sure how long this stage takes to sink in what is going on.

That’s my story so far. I hope to be writing updates for a long, long time!

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: My story
PostPosted: Thu Mar 17, 2011 2:43 pm 
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Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Hi Karen,

Welcome here. We call it the place no one wants to be but are glad it is here. I can only imagine your shock! Mine was found early, but it was still a huge shock. To find it so advanced like this, I can only imagine. And you are so young.

I take it you are in the medical field from how you describe your job and access to the CT and X ray results. Tell us more about you!

If you could tell us if this is NSCLC or SCLC, what stage you are at, what kind of chemo treatments, etc., those of us that have experience with what you are going through (and there is someone here that has gone through what you have), that would help.

We will be here for you. I so wished I had known about this place when I went through my initial dx and treatment.

I totally agree about the BC and AD status. Life changes dramatically but it can change for the better!
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: My story
PostPosted: Thu Mar 17, 2011 11:07 pm 
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Joined: Tue Mar 15, 2011 8:39 am
Posts: 44
My diagnosis is SCLC, extensive due to all the mets. My chemo regime includes Cistplatin and VP 16. My 2nd treatment will begin March 28th.

I am an RN. I work at Mayo Clinic as a kidney transplant nurse coordinator. I love my job but wonder if or when I can return. I am 46 years old with 3 children ages 25, 11, and 10. The youngest 2 are still at home. I am single but my ex lives close and has really been a great help.

I am going to fight this for me and my kids.

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: My story
PostPosted: Fri Mar 18, 2011 6:38 am 
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Joined: Thu Jan 09, 2003 6:22 pm
Posts: 3573
Location: Minnesota (grew up Massachusetts)
Hello Karen. I am an RN also here in Minnesota. I had NSCLC. I went to the Dr. thinking after moving here that I had an Ortho problem from unpacking everything --too old to do that at 50. Turned out it was a tumor in my RUL pressing on nerves that run by the apex of the lung.
We also have in commom I was treated with Cisplatin and Etopiside (VP16), Click below to read my Story.
Wish you all the success I have had!!! with that treatment. SCLC is very succeptable to chemo. I know many that are in remission for over 10 yrs.
Keep us posted.

Donna G

_________________
NSCLC, 4 cm Pancoast tumor, diag. 12/3/97 Cisplatin and VP 16, Radiation, R upper lobectomy, more Cisplatin and VP 16. Celebrating 16 yrs of survival ! Click here and read MY STORY

http://lungevity.org/l_community/viewtopic.php?f47&t=9092


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 Post subject: Re: My story
PostPosted: Fri Mar 18, 2011 11:39 am 
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Joined: Tue Mar 15, 2011 8:39 am
Posts: 44
Donna,

I am very happy to meet you! Thank you for telling me about the SCLC survivors that you know. I need to hear these things as I move forward with this fight.

You don't work at the MOTHER Mayo, do you?

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: My story
PostPosted: Fri Mar 18, 2011 2:37 pm 
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Senior Member
Senior Member
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Joined: Thu Jan 09, 2003 6:22 pm
Posts: 3573
Location: Minnesota (grew up Massachusetts)
No but every one in Minnesota certainly has heard of Mayo!
I work for Fairview.

Donna G

_________________
NSCLC, 4 cm Pancoast tumor, diag. 12/3/97 Cisplatin and VP 16, Radiation, R upper lobectomy, more Cisplatin and VP 16. Celebrating 16 yrs of survival ! Click here and read MY STORY

http://lungevity.org/l_community/viewtopic.php?f47&t=9092


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 Post subject: Re: My story
PostPosted: Sat Mar 19, 2011 2:13 pm 
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Joined: Wed Jun 03, 2009 9:21 am
Posts: 635
Location: Richmond, VA
Karen,
As others have said nice to meet you - even if the reason why is not so nice. I'm one of the lucky ones diagnosed early - and had two surgeries. Almost 2 years now. As you can tell by the response to your post there are many people here that have traveled down the various paths of this disease. Any question, thought, feeling, tear, scream, etc. you share one of us understands and will have the proper words, shoulder, hug, etc. to help. I have been helped here everyday since I found this site and look forward to helping you if I can. Especially with the shell I'm betting you are trying to show your children - you will always have us as virtual friends - with great shoulders.

Best wishes as you carry on this journey - let us know if there is anything we can do for you.

Another thought - we have some excellent medical professional help at cancergrace.org. There you can ask the hard "medical" questions and get some answers from medical professionals - be sure you check that site out too - many of the people that frequent here check in over there as well.

As always - anything we can do to lighten your worry load - here we are.
Annette

_________________
5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!


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 Post subject: Re: My story
PostPosted: Mon Mar 21, 2011 12:11 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
Hi Karen,
I'm glad you found us and hope you draw strength and hope from the survivors here.

I'm keeping you in my thoughts and prayers for complete success. Keep posting and keep us posted.

Gentle hugs,
K


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