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 Post subject: new comer
PostPosted: Thu Mar 01, 2012 12:36 am 
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Joined: Thu Mar 01, 2012 12:13 am
Posts: 11
I am really thankful for this site which offers such valuable real life story and support.

My dad was recently diagnosed of limited stage SCLC with a 3.5cm nodule on his right lung and some diseases in the lymph nodes nearby. He went through 4 rounds of chemo (believe cisplain and etoposide) and chest radiation (2x daily). One month after he completed the chemo, we went for his first CT scans.

We just got the result today and I am a little perplexed as to how to interpret the result. The large mass in his lung has diminished and is no longer seen on the CT and so are most of the diseases on the lymph nodes. However, the CT report indicated that there is a "soft tissue" with the size of 16mm-18mm still remain on one of the lymph nodes. On the impression, it says the "soft tissue is stable and minimally increased". All other areas are cleared. I am not sure what this means? Does it mean that soft tissue is malignant and those particular cancerous cells are not responsive to chemo? If so, will this mass progress now since there are no more chemo at this point? The doctor suggested to monitor and wait for the CT scan at 3 months to see whether it show signs of growth then determine course of action. I asked if we could do sooner or maybe a biopsy and he said sometimes the biopsy could be sampling dead cancer cells which will give a false negative.

Can anyone please shed some light or share your experience with these CT scans? I see a lot of posters saying their CTs are NED, does it mean that it is completely clean without any trace? I asked the dr and he said he would not expect the tumors to be completely gone because sometimes even after the cancer cells are killed there may still be dead tissue or scar, etc.

I didn't want to ask the dr too many questions in front of my dad because i didn't want my dad to feel overly alarmed or concerned as that would discourage his positive spirit thus far. But frankly, based on that CT scan, should we be prepared that the cancer cells have not been eradicated? Is there any action i should take before the 3 months mark for another CT?

I am just so anxious and confused, and worried that the longer we wait the less chance he has especially I know how fast the SCLC can grow....

Anyone who can share their experience will be greatly appreciated!!!!

Thanks and god bless you all!!!


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 Post subject: Re: new comer
PostPosted: Thu Mar 01, 2012 7:44 am 
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Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Hi there! I had NSCLC, but I think my experiences are no different when it comes to CT scans. It is very normal to have a scan, and have a result that warrants "watching." They had been doing this with me for the last year. I had a nodule that looked suspicious, but was not conclusive. It was not a candidate for biopsy, so watch is all we could do.

16mm is very, very small. I would be glad they are watching, but I would also feel okay because it's so small, and they are on top of it and can get at it quickly if need be. I agree with the doctor that doing a biopsy this soon could just cause un-do discomfort, for no reason. It very likely could be gone in 3 months. Chemo works in the body for a long time after the last infusion.

Glad you popped in to post. Hope this helps.

MI Judy

_________________
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: new comer
PostPosted: Thu Mar 01, 2012 11:58 am 
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Joined: Mon Nov 10, 2008 9:37 am
Posts: 878
Location: Southern Oregon
I agree with Judy, and this sort of thing is not unusual. The first time I had a scan report mention something like this, I was worried and concerned because the doctors just wanted to keep an eye on it and did not appear too alarmed. Turned out to be nothing. There is still scar tissue where my original tumor was. It seems to me that doctor's don't always explain things as clearly as we would like them to - especially when we are new to all of this. If your Dad's doctor has permission to talk with you about his case, perhaps you could arrange for a phone appt. or a time to speak with the doctor when your Dad is having his bloodwork done, etc.

Best of luck and please keep us posted.

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas


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 Post subject: Re: new comer
PostPosted: Thu Mar 01, 2012 1:31 pm 
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Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
No personal experience with tumors but agree with the others. What they are watching is very small. It is unlikely a biopsy would add anything to the picture at this point in time. I do hope you get an opportunity to talk to the doctor about your concerns. He or she would be in a much better position to set your mind to rest.

Please keep us posted.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


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 Post subject: Re: new comer
PostPosted: Thu Mar 01, 2012 10:23 pm 
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Joined: Thu Mar 01, 2012 12:13 am
Posts: 11
Thank you, Diane, Judy, and Jamin.

I am a little disappointed that it's not NED, hopefully next scan will show improvement.

Is there anyone with SCLC that had achieved complete response after the first line chemo?

Thanks!


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 Post subject: Re: new comer
PostPosted: Fri Mar 02, 2012 7:45 am 
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Senior Member
Senior Member
User avatar

Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Hi Izzy (may I call you that :-)

I wanted to make sure someone responded back to you on your second questions. I can't answer this question because you saw that mine was not SCLC, but if no one responds here, it doesn't mean there aren't people that haven't responded well to first line.

I don't know if you saw anyone refer to a site many of us belong to called cancergrace.org? It's http://cancergrace.org

That site has Oncologists that offer up good information to enhance what you have been given by your doctors. While they will not give medical advice or diagnose, they can give you valuable input and answer questions like the one you pose here. They are kind, gracious and very caring. This site has been invaluable to me when I just needed further back up of what my doctors were telling me.

If you open an account there, we'd like you to use the user name you have here "izzyleung" so we know it's you and can offer help there too. Obviously you don't have to but we like it! :-)

Anyway, I recommend posing this question there and seeing what the good doctors can say about this.

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: new comer
PostPosted: Fri Mar 02, 2012 8:23 am 
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Legacy Member

Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
I'm not SCLC either but I can speak to my experience with NSCLC. I did respond to first line chemo and was NED for a year, off chemo for six months. But keep in mind, I was stage 3b. I don't know where SCLC "limited stage" falls in my understanding of staging with NSCLC, but if it was early, I believe you can hope for NED after first line chemo. Do try cancergrace.org as Judy recommended. Very helpful there with questions like yours.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


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