Hi everyone,
I am writing with not-so-good news. My father, who was dx with Limited SCLC in october had his latest round of scans which show 2cm nodule in his liver and nearby lymph nodes. It's likely the SCLC has metastasized. The duration since his first standard chemoradiation treatment was a short four months, it's very very discouraging. I am prepared for the worst and feel very sad for my father who has to go through this. We were confident that the treatment was going to get him better for at least a year or two, but I did not think he may end up on the other side of the bell curve. Doc recommended second line chemo of topotecan w/ irinotecan. Has anyone had that and was it successful? We are also looking for clinical trials but there do not appear to be much options out there. Did anyone had any experience or insight into the SCLC clincial trials in this country? We live in NY area and we are trying to get him into Memorial Sloan Kettering. Does anyone has experience with that? The referral process is quite slow which is very frustrating as the wait time for the initial appointment takes up a whole week and I am so afraid that waiting it out cuts his chances while the second opinion may suggest the same 2nd line treatment. Given how rapidly these cells can grow and even days will matter in terms of effectiveness of treatment, I am really torn and pray that MSKCC has better focused treatments. At this point, I have so many questions, so much concern and anxiety. My father appears to be OK, but I am so scared of the next crash and the months to come. We pray the next round of treatment will buy him more time and that's all we ask for. Do we have any hope that the second line treatment will work and give him some longer response time? Any success out there? I am starting to realize that cancer is such an individualized disease and everyone reacts to treatment differently. I am convinced that he's having some really really bad luck as he appears to be healthy prior to all of this and since dx, every news we got was the worst kind...
AT least I still have this forum to express my thoughts and emotions, it's hard for me to imagine what goes through in his mind and what I can possibily say to make him feel better and stronger other than continusly reassuring him and making him feel love and support.

Thanks for listening everyone

izzy

can not help with to much medical but this might help find something..

http://clinicaltrials.gov/

also if you are a member over at Grace Dr West may be able to help. He is a LC oncologist in Seattle that takes care of our medical questions and this is his link. His services to us are free!!

http://cancergrace.org/

He may know of something that might help also... Hugs and Prayers !! that is the best I can do right now!!

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April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I am very sorry to hear about your bad news, however, there is still hope out there. You said you were from the NY area, as am I. I have my mother getting treatment at Columbia with a Dr. Stoopler (She was dx with ex. scls in February and is just about to start her 5th chemo and is on her 11th radiation treatment for her bones.) He is very well known for lung cancer. I also know how Sloan can take forever to get an appointment. I have talked to several people during my mother's chemo treatments at Columbia who are Dx the same. One said that Sloan would not even take on their "case" because it was not unique enough and the other said that Sloan's treatments are the same as Columbia. Also, if you get into Columbia and a clinical trial comes along associated with Sloan, many times Columbia's patients are also included. You can email me for my information as a referral to Dr. Stoopler. He is a wonderful doctor with a great bedside manner and he is "up" on all the new treatments. ..as you said "your dad is okay now." I know from my mother that what keeps her spirits up is that her loved ones treat her the same and not as though she has limited time left here on earth. I am sending my good thoughts your way and do not give up.

Thanks for the update Izzy. I don't know the answers either, but would suggest, as Randy did to take your questions to Cancer Grace. You can create an account there like you did here. In fact use the same "handle" you use here so us regulars there will recognize you! The site is very user friendly. Just post your questions, and ask for a Doctor's perspective and they will answer.

It is http://www.cancergrace.org

I think Randy put that in here earlier too.

Wishing you the best. Do keep us updated at least so we can pray!

Judy in MI

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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

A quick search of clinicaltrials looking for SCLC and NY hit on a few drug trials. Such as this one: http://clinicaltrials.gov/ct2/show/NCT0 ... ANY&rank=1
There are a few other drug trials there too.

I wonder if trying to call the contact numbers on the trials is another avenue to explore for getting a foot in the door at MSK? I have zero experience with that, just sort of thinking out loud.

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My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

Thank you everyone for the support and kind words, they mean a lot to me in helping me getting through this difficult journey.

Petunia, I will PM you for the referral. At this point, we are going to explore all options. Thanks!