Advice for SCLC 42 year old

• By Marg
• Posted September 26, 2008 at 9:52 pm

My husband started with radiation to his chest and the mass there went from the size of a tennis ball to the size of a golf ball. Also the spot on his sternum dissappeared! While he was having that radiation he was also on carboplatnum and BP16. Since then he has had topotecan (did little good) and now has had thre cycles of taxol.

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• By jadams
• Posted September 26, 2008 at 10:13 pm

I had the same chemo regimen but had radiation simltainously (sp) at the same frickin time ;-) I really think that was the key. My tumor shrunk 50% after about 3 weeks. I was NED after initial treatment. Next scans in about a week & 1/2.
Excuse my language, I work in Public Works and this hurricane Ike has got me really frazzeled 2 weeks later. My doctors told me they only recomend brain radiation to people that have had significant results. Supposed to extend your life expectancy by 4 months.
Julie

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• By jadams
• Posted September 26, 2008 at 10:25 pm

I've already had the brain radiation - because I was a good candidate. Fairly young LOL not as young as 42, and it was limited stage. 3 month ct scans coming up, we'll see. I think I can help you thru this if you want to request being a friend. There are not too many people on here with SC
Julie

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• By pattyp1
• Posted September 27, 2008 at 6:53 am

hey, Spot,
ask the onc for a consult with the radiation oncologist anyway. SCLC starts metastasizing fairly early in its growth process - in English, it's kind of like a dandelion that gets white and fluffy and poofs through the body. Its favorite hiding places are the liver, the adrenal gland (one, not both), bones, and the brain (between the white and gray layers), and the place above the heart and between the lungs. There are other places, but these are the majors.

With the brain, it can go into a tumor or just a thin film. Both are bad. The tumor can squish on bad places; the thin film can cause bad electrical things (e.g., seizures) to happen. PCI (prophylactic cranial irradiation, or head radiation) gets to little groups of SCLC cells; gamma or cyber knives are used for bigger groups (or conventional surgery). PCI can be done before, during or after chemo.

By saying what he did, your onc believes that the primary tumor is the most threatening. They will hit it with a whole host of chemos until they find the combo that works.

Here's something to consider - if you go to a plumber, they look for plumbing problems, and they tend to overlook the fact that there might be an electrical problem also. That's why I'm suggesting that you try to get a radiation oncology consult also...

hugs and best wishes!!!
Pat

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• By Marine
• Posted September 27, 2008 at 12:56 pm

I have ext-sclc and found out June 11th. Had 4 rounds of carbo/vp16 and after two rounds had a PET which showed spot on liver gone and spots on rt.lung greatly reduced. Next PET showed no change (Stable) so switched to Taxoteere/Avastin once each week and will take a look in a few weeks to see how it is working. So far no radiation. Talked about PCI which I will want to do. My onc says radiation to chest will not be worth it. Anyone have an opinion on that?
Skip

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• By freddom
• Posted September 27, 2008 at 12:57 pm

I too have SCLC, limited stage. I was diagnosed in 2006. My treatment was radiation and chemo. I was doing great. I just has quarterly CT scan and MRI and the can has spread to the brain. I had my first radiation yesterday. I will have a 3 week cycle. My doctor is optimistic. My initial treatment in 2006 with chemo was carboplatin and VP16. It worked really well for me. I have a radiologic oncologist and a medical oncologist and they worked together as a team. I will keep you posted on my progress. My prayers are with you

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• By lorie
• Posted September 27, 2008 at 5:42 pm

hi my mom has sclc ,well she is NED .she was dx in april of this year ,a she goes back in two months for blood work and an x-ray,then if all is ok she will go back in two more months for another cat scan.my mom had her chemo and radiation at the same time. her radiation was done before her chemo ,she finished her last chemo in aug.she is supposed to have radiation to the brain but she isnt doing it ,although she is gonna consult with the radiologists anyway ,but has lready made her decision. take care and i will pray for your friend. take care ,lorie

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• By lunchlady
• Posted September 27, 2008 at 5:56 pm

HI, My husband has sclc. He had radiation and chemo at the same time. DX in feb 08. In total remission, had PCI 15 rounds. He is doing ok. Tired and food still doesn't taste very good. Has next scan in nov. We live scan to scan. Good luck to you. Pat

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• By spot24
• Posted September 27, 2008 at 10:15 pm

thanks for all of the advice. I just want to be an encouragement. in our situation there has been little sickness or other symptoms. If anyone hears or knows of folks who have survived this thing please refer me to where I can find them. There needs to be a blog or site that has folks who have beat this thing. thanks a ton!

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• By Tmc
• Posted September 29, 2008 at 9:37 am

Hi, I'm going through the same treatment right now. I completed two rounds of chemo (cisplatin and etoposide). I have two more rounds to go. I had my 30 twice daily radiation treatments at the same time. I have limited stage with a plum sized tumor and n1 (lymph node involvement) on the same side as the tumor. I would like to talk to people as well. I'm doing well except for the fatigue of the chemo. I'd be happy to talk to your friend.
Tera

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• By bmack
• Posted September 29, 2008 at 8:15 pm

hi

i have limited stage small cell lung ca. i had 4 rounds of chemo and 30 radiation treatments. in my 3rd round of chemo is when i started my radiation. i have simulation this week to start my radiation of the brain (it will be 15 treatments).

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• By mariannebreathes
• Posted September 30, 2008 at 11:26 am

Hi there- I am 41 and was diagnosed in April 08.
I have had more than a 50 percent reduction but it
hasn't completely disappeared. I still have one more scan. Oh, it was staged limited with left lung tumor and possible lymph node involvement
I received chemo and radiation together . I finished radiation at the end of May and Chemo in August. I chose to also have the PCI radiation and am on treatment 8 today......(so far no hair loss this time---but not holding my breath)
Feel free to e-mail me or add me to your buddy list
Cheers
Marianne

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• By 444
• Posted October 2, 2008 at 8:42 pm

My radiologist said having radiation to the chest was very important because when the cancer returns it usually returns in the place of origin. I am getting brain, chest and hip radiation now. Went through 6 cycles of camptosar and cisplatin. No cancer in lung or liver now, just pelvis and lower spine.
Lori

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• By 444
• Posted October 2, 2008 at 8:43 pm

Did you get radiation to the brain as a preventative back in 06 or did they do any radiation?
Lori

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• By spot24
• Posted October 3, 2008 at 12:02 pm

thanks for letting me know your situation. It sounds like what we are dealing with. I am wondering if you have any pain or discomfort at all? Let me know.

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• By spot24
• Posted October 3, 2008 at 12:03 pm

thanks! The radiation to the chest has ended. The radiologist stated that she would not be able to have radiation for a long-long time. We are hopeful that the radiation has done its job and shrunk the tumor on her sternum.

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• By debra1
• Posted October 3, 2008 at 1:05 pm

All of us SCLC survivors love to respond since we are the minority on this sight. I started treatment 12/06, had combination platinums and campostar/irontecan, radiation to the chest with the chemo, PCI to the head. I have been clear since August 07!

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