Greetings,,we are new here --Thanks for having us :)
Don sclc ext. dx June 2013
Gamma knife for brain met
Rad 6wks w/ chemo
Hosptial infection, neck burn, transfusion,antibotics
finished all Rad/chemo tx's Nov. 2013
Last Petscan Dec. 2013..was to lit up and could not be read suggestions made as to decrease in tumor/RL
possible increase of small tumor to Left Lung.
No scans/no Onc since December...
Jan 31st due for Petscan..I think I've seen where Most sclc patients have CT's vs Petscans.......is there a protocol for which scan is used and when during tx? I don't want to waste anymore time and would like the best scan to get my treatment back on schedule.....
Can you suggest which scan is for what? Also I may be pushing the limit on my questions...is there anything that seems to be working for sclc patients in the 2nd line of treatment? I'm ready to get back and fight this beast with what is the best protocol and source of med...
Reply # - January 14, 2014, 11:39 AM
Welcome to GRACE. I'm sorry to hear of your diagnosis, but I hope that there really was tumor shrinkage as a result of your previous treatment.
As far as CT vs. PET, the following discussion by Dr. West may be helpful: http://cancergrace.org/lung/2007/11/03/pet-scans-for-surveillance/
In terms of second line therapy, you may want to start with Dr. Gadgeel's Introduction to Small Cell Cancer at http://cancergrace.org/lung/2010/08/03/intro-to-sclcref-lib/ and his discussion of Treatment of Small Cell Cancer here: http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…
If you have further questions, please post them.
Reply # - January 14, 2014, 12:08 PM
Jim has posted but I'll let mine stand. Hi Jim!
Hi Don, Welcome to Grace. It's never a good thing to need us but the info learned here can make all the difference. Even if it doesn't change your treatment plan it will help you know you're on the right course, again making all the difference. I'm sorry to say the treatment for sclc hasn't changed much lately with no new advancements but with an understanding of how your cancer and options you can live your life as well as possible.
This post describes the standard treatment for sclc. The discussion on extensive stage starts not quite half way down under the heading, "Treatment of Extensive Stage Small Cell Lung Cancer Patients"
There are several short video and written posts on the research happening with sclc but unfortunately no big changes have happened in the standard of care though there may be trials in your area that appeal you and your oncologist. The most recent discussions are first, http://cancergrace.org/lung/tag/small-cell-lung-cancer/
Ask follow up questions and please keep us posted.
All the best,
Reply # - January 14, 2014, 06:20 PM
Thanks to Jim and Janine for providing the key information here. I'd really say that PET/CT scans for following advanced disease are rarely needed and have been identified as a leading area of unnecessary expense compared with a CT. You're really looking for a clear signal of progression, so you shouldn't need a PET/CT to identify that. With only very rare exceptions, if the change isn't visible on CT, it's not a clinically relevant change. And there isn't a clear value in heaping on more treatment in this situation when there isn't clear progression.
Prophylactic cranial irradiation is an approach that is routinely pursued to optimize survival after completion of first line therapy, so that may be an appropriate option to pursue here.
Beyond that, topotecan is the leading systemic therapy in patients who demonstrate progression after having received first line chemotherapy.
Reply # - February 8, 2014, 12:26 PM
It is now Feb., I've had my follow up CT scan. Seems the Pet\Ct we discussed in Jan. Indeed lit up from radiation and was told..left lung tumor doubled since June dx!!
My CT scan Jan. 27th said left lung was clear!! Indicated what was seen was most likely inflammation from radiation!
The next day...my Onc calls and said I am now Stable!! I don't need to come in until next scan in April!!
I'm elated :-) but still concerned about that Dec report and waiting 3 months.
Can you tell me more about what the word 'stable' means for sclc ext? We are relaxed and enjoying each day, but still have that nagging feeling of what I was told in December!
Please help me understand how such a mistake could happen ....l was totally prepared for chemo in Feb!
I am Blessed..I know that for sure...The onc now says Stable is Good...please explain what it means.
Thank you again in advance for your time.
Reply # - February 8, 2014, 01:09 PM
Great scan result and report! The previous report illustrates why PET scans aren't so great for follow up, causing concern because they show inflammation that is mistaken for progressing cancer. Glad the latest scan showed your lung was clear!
"Stable" simply means that any cancer seen on scans does not appear to be growing ("progressing").