A dear friend of the family was dx with sclc undifferentiated. The onc said they do not stage sclc and that his recommended treatment is chemo w/concurrent radiation and then when that is over radiation to the brain for precautionary reasons.
I have never heard of this and hav tried encouraging a 2nd opinion - but they do not want to wait any longer to start treatment.
Has anyone ever heard of this?
kosby
My dad has SCLC - extensive. My dad's cancer had spread from his lungs to the liver and the bones in his back.
There are two stages for SCLC - limited and extensive. It's not uncommon for radiation and chemo to happen together. When my dad began treatment two months ago, the docs were thinking about doing the radiation and chemo together. It was decided to do radiation alone because the radiation oncologist was radiating such a large area. My dad had his first chemo treatment six days after his last radiation treatment.
The onc is not talking about whole brain radiation for my dad since his disease is sooo extensive.
My dad had a CT scan last week. The scan showed the cancer had shrunk. We were happy to hear that. :)
Kristi
Good Morning Kosby....
My ONC wanted me to go to a radiation ONC to have preventitive radiation to the brain.
I have understood radiation to pinpoint one spot and go from there, I'm still wondering how they do the entire brain!!!
I live in Colorado and not having hair this past Winter was tramatic to me, body heat escaping. I am finally starting to get it back and radiation on the head can make you lose hair permanently, so I'm going to leave well enough alone. It's not a vanity decision, but a warmth thing!
This may not be your choice and I wish your friend well whatever decision ya'll make, your both in my prayers.......Spiderwebb :))
Well, my dad is having radiation to the brain at this time because he has tumors. It is common sometimes for the cancer to spread to the brain. The purpose of the radiation is to shrink the tumors. In a lot of cases they disappear. For my dad his tumors are affecting his memory and thinking process. Is your friend having problems like this? Did they see something on the brain and want to treat this before they grow bigger or in numbers? Not trying to hurt any feelings has your friend been doing some odd things? Trust me my dad has done little things and was easy to cover for them. It wasn't untill a female friend slept over that we realize something is really wrong. To wait will allow even more problems. I wonder if my dad's doctor had done it when he was doing chemo for precautionary measures if he would be different. My dad can't drive or stay alone anymore. He doesn't sleep and sometimes changes clothes 3 to 4 times a day. Yesterday we had to go to KFC at 9:45 am and wait till they open for 11 am because my dad wanted chicken and couldn't understand they don't open that early. His sense of time is off. If your friend isn't showing any of these or other symptoms, I am happy. My dad is like a 1 to 2 yr. old. He has to be told and asked alot what are you doing, where are you going. Then we have to persuade him to do right. Every now and then he get agitated and asked why can't i do this or go here or get that, it is hard. To most he seems normal for a while, then he changes. Talk to your friend family or support at home to see what may be really going on. I am glad the doctors want to make sure things are ok but radiation is hard on your body and takes a lot out of you. He is very weak. I am hoping i left you with some questions to ask your friend and not a bad feeling. Please if i offended you please write me back and tell me. I treasure all comments good and bad and welcome all info. I will think of you and your friend. Write me back and let me know how your friend is doing. HUGSSSSSSSSS
Hi Kosby:
I had the same thing as your friend, limited sclc, had the chemo and the radiation at the same time. Took CT and PET scan, MRI and NED. One month later I had the radiation to the brain for prevention. 10 treatments to be exact. My hair was growing back, after treatment to my head I look like a billiard ball. I don't know if it will come back or not, but I have plenty of wigs,scarfs, and hats. An ounce of prevention is worth a pound of cure. God bless and be with you and your friend.
Candi
It sounds very similar to my mom's treatment. She has limited sclc. She was lucky and had a complete response to the chemo and radiation so they recommended "strongly" that she do the pci. She finished the pci (prophylactic cranial irradiation) in March and her hair started coming back in the end of June. It was all pretty scarey but she has had great results so far. Sounds like your friend is getting good advice.
Hi kosby,
PCI - Prophylactic Cranial Irradiation - is commonly recommended when someone has limited stage SCLC. SCLC in general spreads more quickly than NSCLC, and it can spread in "micrometastases" too small to be seen on scans. When it spreads, it often spreads to the brain, which is why the recommend it for SCLC. Also, you probably have heard that chemo generally doesn't cross the blood-brain barrier, so going through chemo would not protect against brain mets.
So it sounds like the onc is on target as far as what the standard of care is for limited SCLC.
And yes, as folks have said, it is staged as limited or extensive, not with numbers the way NSCLC is staged.
Amy
Hi Kosby,
Your friend's recommended treatment is very much like my Mom's. However, she did not have chemo and radiation at the same time. I'm not sure if her age had anything to do with it or not. She was 70 at the time of diagnosis. She had PCI after her other treatments were complete. There were very few side effects and she is doing great now. I would say your friend's doctor is right on target. Good luck!
Jodi
Kristi and all others who replied -
Thank you so much. Having NSCLC I have very limited knowledge of SCLC and you have all helped me to understand that my friend is getting good advise.
Thoughts and prayers with all of you.
kosby
Hello!
My mom was DXed with limited SCLC in October 2007--she had good response to chemo and radiation with all her scans coming back clear. She then had 10 PCI treatments and so far the scans are clear!
She has had problems with dementia type symptoms--not sure if they are a reult of the PCI or not for sure--we ar in the process of checking into this.
For those of you concerned with the hair loss--my mom's hair is now growing in nicely!
Take Care!!
Mary
Hi, My husband has sclc. He had chemo and radiation at the same time and then had pci to his brain. 15 treatments. He is in complete remission. The side affects he has is being tired all the time. He had his last treatment 4 weeks ago. Good luck to your friend. Pat
My mom was dx with sclc also and currently going through the exact treatment that you described she is done with radiation ,is doing her third chemo treatment,and has one more then they will do scans and then do radiation to hthe brain for preventative measures,10 - 12 is what they say.i will be praying for your friend lorie
In September, 2007, I had ten treatments of whole brain radiation. I did not have steroids to prevent brain swelling. My brain did not swell.
During the two week period I became very tired, nauseous, and had no appetite.
I lost all my hair after a few weeks. I cried!
After several weeks, I began to feel better with more energy and a better appetite.
My next MRI showed shrinkage of the 4 brain lesions. The following scan showed no sign of any lesions. That was in May, 2008.
However, I struggle with short term memory and vocabulary recall.
My hair is beginning to grow back. It is about an inch long at this time.
My latest scan was a week ago (July 15). The lesions are back. They are tiny, but they are back.
I have an appointment to discuss the MRI with my oncologist and radiation oncologist.
Peachy
Kathy,
As you know, I had the Cyberknife Radiosurgery. One treatment. Takes up to 18 months to work completely, but mine is gone according to the PET scan of the brain. And as well as you also now, I am having brain seizures due to the radiation changes affecting the Neurons on the brain. Hopefully in time, these will go away. Luv ya girl!
Let me know how your friend is doing. Email me
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