Hello,
My Mother was diagnosed with extensive SCLC lung cancer approximately seven weeks ago with mets to adrenal glands, liver, mediastanium. She has received 2 rounds of epotoside carboplatin. I had some concerns some general information might help with.
1. How fast does the chemo work/ shrink tumors? The doctor did a Cat scan this week 14 days after starting the second round. The mediastinum masses looked to have reduced in volume about 70%ish each the adrenal 10%, The largest lung mass went from 1cm to .6. the liver still has "innumerable nodules" Should the chemo keep working or does it just work a short time from the infusion?
2. There's apparently a new .7 cm mass on the lung. There was a 20 day lapse between the lung CT used for comparison and the start of chemo. Could new small sub 1cm masses have popped up in the meantime?
3. Mother has Cholelithiasis/stones in central bile duct. She actually had gone in for gallbladder surgery which is how this got discovered. All her liver function tests which had gotten very bad have returned or gotten close to to normal except ALP and Bilrubin, which seems like potentially a blockage issue. If this gets to be a critical issue is there anyway to address it during chemo?
4. Mother had a progressive undiagnosed weakness several years before this. I wondered if this was connected and stumbled on something in apparently 1% of SCLCcalled Lambert-Eaton syndrome which sounds exactly like her weakness issues. Also associated was dry mouth which she had crazy dry mouth when the symptoms of the cancer finally started getting out of control. It looks like if you treat the cancer it treats the syndrome. Is my suspicion about this something I should mention to the doctors or is it just nonactionable even if true. It may just be false hope on my part it seems to be associated with a substantially better(though still dismal) prognosis.
Thanks so much for any information or thinking.
David
Reply # - May 31, 2014, 09:37 AM
Reply To: SCLC Extensive First Line Questions
Welcome David, I'm so sorry about your mother's diagnosis. I think we can help with some general info.
There's been no thought sclc has early signs years prior to onset, so the weakness wouldn't be thought to have anything to do with the cancer.
It's possible the second mass grew during the time between first CT and the beginning of treatment. I'd not think of it to be growing through chemo especially since she's done so well so far. When first line chemo works well on sclc it works very quickly as you've stated about your mom and the early CT doesn't mean the liver nodules won't respond with the rest of this line of treatment. Many onc like to make sure the chemo is working before they continue giving it. So the latest scan results sound like a cause for, if not celebration then cause for a sigh of relief.
The problems with the bile may need to be looked at among a team if it comes down to a need for action, perhaps the onc with those involved with the Cholelithiasis/stones.
Here's a link to our library on sclc. Note that the most recent/what's new in ex sclc, will be shown first and the most basic probably towards the end. http://cancergrace.org/lung/category/lung-cancer/core-concepts/sclc-ext…
Keep us posted and sending hopes that your mom will continue to respond well,
Janine
Reply # - May 31, 2014, 07:34 PM
Reply To: SCLC Extensive First Line Questions
David,
Let me first thank Janine for stepping in when we couldn't get a doctor faculty member to do so -- a huge number of medical oncologists are at the biggest cancer meeting of the year, called ASCO, right now. It's such a busy meeting that it's extremely hard to find much time to check in for the next few days. Apologies.
Actually, I do think there's a significant chance that her weakness could be Lambert-Eaton syndrome, and it could be an explanation for her dry mouth as well. Yes, the treatment is basically to treat the underlying cancer as best you can. However, there can be residual weakness from nerve damage that doesn't necessarily reverse after treatment, so I wouldn't conclude that her cancer isn't responding if her weakness persists. It's certainly reasonable (arugably advisable) to mention to her doctor, but I don't think it would change management.
Responses to SCLC can occur within days to a few weeks. It can certainly take longer, but it's not rare to have rapid tumor shrinkage from chemo for SCLC.
Because SCLC has the potential to grow so quickly, which is also what makes it very sensitive to chemotherapy, it is conceivable that new nodules could emerge from progression over the course of a few weeks.
It is potentially possible to do gallbladder surgery if necessary. It'd be quite preferable to try to time it to occur at a time when her blood counts are OK, such as in the days right before a planned subsequent treatment, or to take a break of a week or two between chemo regimens to pursue surgery if it looks like that's going to be needed. But sometimes you can't pick the time and just need to proceed with surgery if it's an emergency.
Good luck.
-Dr. West
Reply # - June 1, 2014, 11:59 AM
Reply To: SCLC Extensive First Line Questions
I'm not at all sure this needs to be asked because I don't think treatment or care will change, but FTR I wonder if Dr. West noted your mother's symptoms of the possible Lambert-Eaton syndrome began years prior to dx. I say this because there is conversation in the oncology community about there being a connection between nsclc and some people, my husband included spontaneously (without trying or planning) stopping smoking 3 or 4 years prior to dx. The conversation included how this would be out of context with what's believed to it sequence of events leading to nsclc dx.
I really am just curious about it.
Reply # - June 1, 2014, 02:28 PM
Reply To: SCLC Extensive First Line Questions
Thanks -- I missed the years, misread as "a year", and do agree that it's exceptionally unlikely Lambert-Eaton syndrome would develop years before SCLC would be diagnosed.
-Dr. West
Reply # - June 5, 2014, 12:45 AM
Reply To: SCLC Extensive First Line Questions
Dr. West
Thanks so much for the response. It really helps to have good information, hopefully someone else with a similiar inquiry will find it later. Unfortunately it seems like our luck is running very thin. Over the last week Mother's bilrubin kept increasing from 7 to 13 . (Laboratory is 1.3 Upper Limit Normal so 10x)
She couldn't have chemo today and has an appointment in 2 weeks. the oncologist is getting is carrying the CAT scan for a second opinion since while she has CBD obstructions severeness was not noted on the scan. We were told that while it was very possible she has a CBD obstruction causing this they couldn't do chemo with the bilrubin that high. (which I understand even if the other liver tests are improving).
The nurse practitioner meeting with us today was very careful not to get any hopes up and indicated even if a CBD gallstone related obstruction is causing this it might be difficult to find a surgeon willing to do the ERCP or stent.
I understand it could be a non-responding intrahepatic liver met or drug related. (they said to stop all supplement for the next 2 weeks.)
On a more painful note I've read that it's very hard to research SCLC due to a lack of tissue samples. Science has always been very important to Mother and are there any resource on how to donate her tumors?
Thanks so much for this invaluable resource.
David
Reply # - June 5, 2014, 05:09 AM
Reply To: SCLC Extensive First Line Questions
Hi David, I'm so sorry your mom isn't getting better results from her blood work. Dr. West has stated that it's best to speak to the local research/teaching hospitals for tissue donation. They would be the ones to receive them and make the arrangements. It's a painful discussion and even more difficult decision. You should be very proud of her.
All the best,
Janine
Reply # - June 5, 2014, 08:09 PM
Reply To: SCLC Extensive First Line Questions
It may be very hard for her to improve enough to pursue chemo. I'm afraid that SCLC can often be relentless.
It's actually not so much access to the tissue as the problem of a very mutated tumor that continues to evolve during treatment and become harder and harder to treat, all too quickly. However, I applaud your mother's thoughtfulness and altruism.
Good luck.
-Dr. West