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Not the news we were expecting on my dads latest ct scans.


Guest JasonChang

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Guest JasonChang

Hi. everyone, I'm new to this board, but I posted in the topic regarding surgery in SCLC. My father was diagnosed in Early Feb. 2003 with sclc. From what i understand he had limited sclc with one primary tumor in his left long that measured 9cm's. The doctor referred to it as a softball. The plan was to start chemotherapy and also radiation therapy. His regime included vp16, and cisplatin, 3 days a week, with a 3 week break, folling a another 3 days. He did this until 12 days of chemotherapy was completed. My dad did pretty well with the nausea, and made sure to force him self to get some food down even when he wasn't feeling hungry. Well after both treatments, then he had a ct scan to see where we stood. They only found one suspicous thing. 1cm, they thought it was probably residue. Since my dad's performance status was pretty good, his oncologists discussed having surgery to remove the left over residue. He had the surgery and everything was sucessful. He was considered to be in remission. I talked to my dad about getting PCI, but he wasn't too sure of what it was. I thought his radiation oncologist would offer this to him considering his status, but he did not. and my dad never talked to hima bout it, i had always planned to go with my dad to his meetings, but something would always come up the day of his appointments. A few days after the surgery my dad had a little pain near his incisions, and also around his left ribcage, there apparently were scabs around this area too. So we thought it was from the surgery procedure and were never to worried about it. Well 3 months pass by, my dad feels pretty good, is starting to ride his bike more often as well as go on light jogs. Ct scans, for his 3 month check up, come back with bad news. :-/ the cancer is back in a few different spots. The report noted, that there had been interval development of a left sided pleura effusion with loculations anteriorly and posteriorly mainly along the mediastinal recess and the paravertebral gutter it also notes a large airspace disease along the posterior and lateral basal segments of the left lower lobe. its either tumor recurrence or metastasis. To make things a little worse, they found two large subpleural nodules at the diaphramgatic surface. I think this would explain the pain my dad had near the spot he had surgery. Also found a left adrenal mass measuring 2.9x2.6 cms and one more ill defined lesion in his right hepatic lobe. So im assuming he has 4 new tumors? Im not too sure, but if someone can explain this I'd be grateful. From what i read about recurrence, prognosis, isn't too good. However, I'll keep the faith . his doctor, wants to do topetecan, with cytoxan. his doctor couldnt gurantee anything but said there's some hope with these two. He starts the chemo tomorrow for one day a week, for 3 weeks straight, followed by a 1 week break and plans to use it until it stops working. I just wanted to know, what other regimes are out there for recurrance or metastasis disease? Im sorry this post is so long, but im just a bit scared :(. my dads 54 and im 20. any info would be greatly appreciated. thanks.

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Hi Jason,

Welcome. I'm sorry that you have to join us under these circumstances. My mother also recently has recurrent SCLC. Her doctor is also going to put her on Topetecan. Her doctor only gave us a 20% chance of it working for her but your dad is much younger than her (shes 71 and she is in a very weaken state of health right now) so do not give up hope. I will keep your father in my prayers. He sounds like a very strong man.

Susan M.

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I had cisplatin and camptosar the first go around with chemo and I was in 1 year of remission after that. Then I had reccurence in the L lung and did 6 mos of carboplatin and VP-16. I have been 1 mos free of chemo this time-remission-what a nice word. You can ask about the camptosar. I understand they have had good results with it. I did.

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Hi Jason,

i know how it feels to be kicked in the teeth! My dad did the 3days every 3rd week and all looked fine. 2 months later, the tumor on the liver grew back bigger. He is now on Topotekan for five days every 3rd week. Maybe this is a better, more aggressive approach that your dad might want to take. He will be doing this until something changes,either good or bad. My Dad is at Memorial Sloane Kettering in NYC. His Dr. has always told us that

it isn't a good idea to do surgery on someone with sclc. We never asked why, because we didn't want to hear the answer. We just know that it isn't an option for him.

If it is possible, maybe you could get him another opinion at MSK.

I want to thank all of you who wrote in with your sclc survival stories. It worked. He is back to being positive and hopeful. Keep them coming! It helps me too.

Kate

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Guest chelsealam

Hi Jason,

I refer to a book which write the following and for your reference:

RECURRENT CANCER

If small cell lung cancer recurs, the prognosis is very poor regardless of stage or treatment. The expected average survival is 2 to 3 months, so a patient should be considered for either palliative therapy or participation in clinical trials.

1. Palliative therapy: palliative therapy could include chemotherapy agents that have not yet been used or radiation therapy for bone matastases or when otherwise appropriate. Recently, the drug Topotecan has been approved especially for its use as a second-line treatment for relapsed small cell lung cancer. Regimens for other conditions include Taxol &/or irinotecan. The likelihood of a response to a second type of chemotherapy for relapsed small cell lung cancer depends mostly on how quickly the relapse occurred, from the completion of the previous chemotherapy regime. Patients whose disease relapses less than 3 months after completing their initial treatment have primary refractory disease. The chance of a response from a second chemotherapy is less than 10%. Patients whose disease returns between 3 months to one year, after completing their initial treatment, have a 50% chance of response to a second type of chemotherapy. Patients whose disease relapses over one year from the completion of their treatment have an 80% or better chance of response to second-line chemotherapy. So the decision to proceed with additional chemotherapy depends on the condition of the patient and the duration of the initial response to treatment.

2. other palliative treatments include measures for pain relief and orthopedic aids.

Hope this could help !

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Hi Jason,

my advice is don't read the books. My Dad's came back 2 months after his first round. That was 4 months ago. The lung is still clear and the last ct showed the ones on the liver getting smaller.

A lot of how someone fairs with this is their will to fight, pray and be positive. They should visualize the tumors getting smaller and disappearing every time they lie down to sleep, rest or are getting chemo. They should also be visualizing themselves at every land mark birthday! Stay positive. Pray and have others pray for him.

Kate

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Boy do I agree! DO NOT BELEIVE THE STATISTICS. Books and statistics come from someone sitting in a small office 18 hrs a day and that person or computer DO NOT KNOW THE WILL FOR HUMAN SURVIVAL!! Please go for the gold. We on this board do not just say "oh well stats say I won't make it, oh hum!" Believe in miracles! They happen everyday. :D:D:D:D

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Agggggggggghhhhhhhh!

Chealse, Honey, I know you're only trying to help, but quoting books that tell someone that they only have 2-3 months when the author doesn't know anything about the particular case, only accomplishes one thing - removing HOPE from their arsenal of weapons to beat this beast.

(Please don't be hurt. There are tons of books and web sites out there that have outdated/old statistics in them. We work very hard here to raise peoples hope after turning up here depressed from reading those stats. And there IS hope.......)

Jason - get your dad in for second opinions if you aren't 100% comfortable with what they're telling you - or if you don't think they're offering you the best of choices.

Good luck - don't ever stop hoping and praying........

Hugs and prayers,

SandyS

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Guest JasonChang

Thank you all for your suggestions, I am still searching for someone to get a second opinion from. i called cancer treatment centers of america, but they told me my fathers insurance would probably not approve of out of state treatment. He has Blue Cross Ca. My dad is still in high spirits, and doesnt seem to have too much pain. He's still ambulatory and is eating pretty well. Although when i put my ear up to his chest I dont hear air flow in his left long as loudly as his right lung sounds like. So this keeps me a bit worried. The chemo so far which consisted of cytoxan and topotecan, has not been too hard on him. He has only gone for one day every week, and has not had harsh nausea or fatigue. Do any of you know if it would still be a good idea to get a second opinion even though he's going through treatment right now? THanks for all your help you have helped ease my mind. Everyone is in my prayers, together with God, we can win. :). God says never to have doubt, so ill do just that.

God Bless

Jason

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It is always an excellent idea to get a second opinion, even a third opinion. I have gotten three opinions myself, I believe it is my right as a patient, it is my body and my life. As for the books, I wish they could all be burned. They are outdated statistics and I wish that people would not quote from them on these boards. We are here for survival not to be quoted "statistics" to, please keep them to yourselves. No one knows when they are going to die. I personally would never let a book dictate my life span. I was diagnosed with SCLC seven months ago and I am thankfully still going strong and intend to keep on going as long as the good Lord lets me.

I believe everyone's case is different and no one can predict how each individual will react to treatment. Tell your dad to keep up his strong spirits and keep on fighting.

Bess B

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