Hi
My mum was diognised after a lump taken out on back of her shoulder , with Squamous Nslc mets to brain bones kidney and liver . She had 30 rounds of radiation to spine and brain for mets .after a week break she started carboo/taxol on 10th Feb , now she is due for 3 rd round .sheis on 37mg durogesic for pain and she takes opioid painkillers through out the day for extra pain . She has a lump grown again whe she had the surgery , and its easy to see it s that big . What does it mean ? After 3rd round chemo doc was going to see if chemo is working or not , but what happens if its not working ? Should anything be done for the new lump ? She is getting severe pain from it which annoys her a lot , its all the time hurting her bad . She is Egfr and Alk negative ... What is the best next step ?
Thanks very much ...
NSCLC stage IV - 1255423
murat
Posts:16
Forums
Reply # - April 6, 2013, 10:40 AM
Reply To: Nslc stage 4
Hello murat, I'm so sorry your mom and family are going through this.
Your questions are very well understood by everyone here with stage IV lung cancer or with a loved one with it. It's a difficult and complicated subject so don't try to understand everything and we'll help you understand the things you need to. Our doctors have created an extensive library on a wide variety of subjects so I will link you to the ones I know will answer, or begin to answer, your questions. Please give them a read or two then don't hesitate to ask follow up questions. Also there are "further reading" links at the end of all the blog posts.
You can access these blogs posts by clicking on the "general cancer info" and "focused cancer info" links at the top of the page (then click on archive drop down menu on the right column). We have few links on the FAQ link in the right column of this page. The search engine is very good though you may need to log out to access it depending on your browser.
talk to the surgeon about the lump on the surgical site. It's impossible to know what it is without being directly involved. That should be assessed by your mom's team of doctors.
It sounds like she is on a reasonable type of pain management but if it's not working she may need more upfront in her durogesic dose or try a different med. Different people react differently to these drugs. Here is a discussion on pain management, http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…
On assessing response to treatment, http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…
On taking tarceva even without an EGFR mutation, http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/
On second line treatment, http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
Again don't hesitate to ask questions.
All best,
Janine
forum moderator
Reply # - April 6, 2013, 11:10 AM
Reply To: Nslc stage 4
Hi murat, I just wanted to say hi and welcome you to the forums. Like you, I am a caregiver to a family member living with cancer and I can understand your anxiety and apprehension. Speaking from personal experience, our oncologist thought it useful to perform a scan between our 3rd and 4th cycles under the 1st line chemotherapy just to assess how well my dad's response is. I see from your post that your oncologist is also thinking along the same lines. Perhaps there can be more clarity on what's going on after the scan and you can then be better guided as to the next steps once equipped with that information.
Reply # - April 6, 2013, 02:25 PM
Reply To: Nslc stage 4
murat,
A repeat scan is the way to get the clearest picture (so to speak) of the response or lack thereof to first line chemotherapy. However, sometimes it's clear from things like new or growing lesions that the cancer is progressing despite treatment. Her oncologist may want to do a scan at the previously scheduled time, perhaps earlier than that because of these new developments, or perhaps just examine her and conclude that there's clear progression.
The links that Janine provided describe our leading possibilities outside of a clinical trial. Most commonly, the standard chemo agent Taxotere (docetaxel) or the targeted therapy Tarceva (erlotinib) are the treatments favored as second line therapy in the US for squamous NSCLC. However, I must confess that if there's rapid progression of the cancer despite good doublet chemo in the first line setting, it's pretty unlikely that either of these will be particularly effective. The finding of a cancer progressing right through initial chemotherapy is an indicator of an aggressive, rather treatment resistant disease.
Within the realm of clinical trials, there are several novel therapies, but one that I've been especially impressed with, especially for patients with squamous NSCLC, is the immunotherapy nivolumab, which is an "anti-PD1 therapy". This is a link to a trial where patients are randomized to either nivolumab or Taxotere:
http://1.usa.gov/10E79V4
This trial is available at many sites around the US (and world), and I'd consider it a very appealing option in this setting. Patients have a 50:50 chance of being randomized to the study drug, but outside of the trial, they have a 0% chance. And beyond the reported responses seen to this treatment in some heavily treated patients, particularly those with squamous NSCLC, I've got a patient who progressed right through first line chemo but is having a great response to nivolumab now -- with essentially no side effects.
Good luck.
-Dr. West
Reply # - April 6, 2013, 03:19 PM
Reply To: Nslc stage 4
Dr. West your post brings spontaneous relief without even knowing there was tension. Very hopeful drug indeed and I didn't even know it had a name.
Dr. West do you suppose these dates will hold if the data are as good as it first appears? Or if it is continues on an outstanding way may it get moved forward more quickly?
From your link above, "Estimated Enrollment: 264
Study Start Date: January 2012
Estimated Study Completion Date: August 2015
Estimated Primary Completion Date: August 2014 (Final data collection date for primary outcome measure)"
Luke your posts always brings light into this ugly situation.
Reply # - April 6, 2013, 04:33 PM
Reply To: Nslc stage 4
I don't think it opened quite that quickly, but I think it's enrolling well, as there is certainly great interest in this agent among oncologists. I'm receiving referrals from colleagues in the area who want to get their patients an opportunity for an agent like this, and I've certainly been inclined to recommend this trial for my own patients. So I'm hopeful it will accrue briskly, but those projections are only vague estimates that include many variables.
-Dr. West