Stage IV Squamous NSCLC-Mets To Liver-Treatment Questions

[lightchasr]

Hi, my name is Roxanne.

I need feedback concerning treatment option at this point to decide how to proceed. My apologies for the need for such a long post!

In May 2014 I was diagnosed with stage IV squamous cell carcinoma lung cancer with mets to my liver. There was no primary tumor and it was diagnosed via a liver biopsy. The cancerous lesions are "mostly" small and are widely spread in both lungs, lymph nodes in lung area and liver.

I did a six month chemo combo of Carboplaten/Abraxane. I had a small amount of shrinkage of the lesions and the majority of the lesions just remained stable. Three months after the end of chemo I was "technically" stable but due to having some progression I was able to get into a clinical trial of Nivolumab (Opdivo).

Two months into that treatment my CT scan showed me completely stable, which was a surprise for my doctor as his other patients mostly responded with good results after four months or so on the drug. This gave me so much hope as the side effects were minimal.

My recent scan showed some progression (my doctor says mild progression) and initially he wanted to take me off of the Nivolumab and switch to Gemzar chemo. He thought on it some more and decided to let me continue the Nivolumab for approximately six and a half weeks, then do an early scan to see if the progression had halted.

I was told to continue to think of possibly using the Gemzar during this time. I think he may have opted for the additional period of time on the Nivolumab to give me more time to think about the Gemzar as I am more inclined at this point to just stop all treatment rather than going back on chemo. I had very little quality of life while on chemo and for a couple of months after it was stopped. I dread going back for more.

I have looked at many posts at another lung cancer support group I belong to and they reported that Gemzar had much milder side effects (but still had some hair loss, nausea/vomiting that could be controlled by medication and most reported it causing issues with the blood cells, making the need for those dreadful Neupogen injections the norm through most of treatment and a very few had to have blood transfusions. But I also noted that the majority of the patients on Gemzar had adenocarcinoma and not squamous.

So my questions:

1) Is there a noted difference for potential different outcomes in the effectiveness of Gemzar based on having adenocarcinoma vs squamous?

2) What were the major side effects you experienced on Gemzar. Did you lose your hair or if it thinned, was it a marked amount. Did you find that you needed treatment to get your WBCs back in line often on this drug?

3) If I did not have remarkable results on the first line choice of the two chemo drugs in the beginning, can I honestly expect the Gemzar to make a difference? (My question is based on the fact that they did not chose this drug first-so if the first treatment was more effective to give me a chance-can I really expect a drug not shown for helping in the beginning to now stabilize or shrink my lesions and if so---why? Does having had a previous doublet treatment make your body respond better at a later date to a drug not considered before?) I am trying to understand the reasoning.

4) Last but not least, has anyone with squamous lung cancer been on the Opdivo and gone back and forth between progression and stability or shrinkage? I ask this as I am so tentative to going the chemo route again that I am thinking of just stopping all treatment and just going the palliative care route. Knowing this, a friend asked why not just stay on the the Opdivo rather that go without any treatment since the side effects are minimal and it "might" even do some good?

I am digging deep so that I can make the right choice. I have been given this six and a half weeks of Opdivo to see if the progression continues and that will be toward the end of this month (September 2015).

I will welcome anyone's feedback of personal experience, links to articles which address any of this as related to squamous lung cancer as the response to various drugs with squamous and adenocarcinoma appear to be quite different and with very different maintenance protocols.

Thank you so much.

Roxanne

[Tom Galli]

Roxanne,

 

Welcome.  You've been through a lot.  I share your diagnosis: NSL Squamous Cell Lung Cancer.  My infusions of taxol carboplatin, at that time the standard of care, occurred in 2004 through 2006. This timeframe is well before the approval of Opdivo and Gemzar so I've no direct experience with either drug.  A good friend who shared our diagnosis and treated with taxol carboplatin as first line therapy, was given Gemzar in combination with carboplatin as second line therapy.  He experienced far fewer side effects but treatment was not successful.

 

I've read great things about Opdivo and you've obviously done well despite your recent progression.

 

You've asked really tough questions and unfortunately I can't give detailed answers.

 

But, you've stated a desire to make the right choice and so this is how I'd approach the choice.  Consider, the primary effect of chemotherapy is extra life.  This is hard to remember while in the mayhem of treatment, but despite first, second, and third line taxol carboplatin failures, I lived another 2 years.  Just long enough, in fact, for Cyber Knife radiation to become FDA approved for lung cancer patients.  That saved my life.

 

Cancer is just plain hard to kill with chemotherapy alone.  But, I was having a good response and my oncologist was trying to keep me around until something hatched out of a trial or research.  

 

Might you be on the same path?

 

Stay the course.

 

Tom 

[CindyA]

Hi Roxanne,

 

Welcome to the group. How are you feeling? 

[lightchasr]

Tom & Cindy, thank you both for your responses.

At this point I am having a rough time. I am still on Nivolumab after sitting down with my doctor for a "give me the brutal truth" conversation. I gathered my resources, laid my cards on the table about what I had found concerning my issue. My doctor had been given a full list of questions that needed answers based on my research.

Basically he agreed that my research was current and valid and very realistic with what he deals with. He did agree that staying the course with the Nivolumab for now is the best option, even with the progression. I asked the question that he has been wondering and that was "is the lung cancer progressing so slowly due to the Nivolumab?" as it is normally quite aggressive.

We made a deal-he needs to put the chemo on the table from time to time as an option as long as I am strong enough to possibly survive the treatment. Our deal is that he will continue to offer it as we go forward but if I say no to the chemo, he will respect my decision. He is also okay with the continued use of Nivolumab, even if I continue to have progression-unless he feels the medication may damage my life. Jack The Ripper has taken up,residence in my body-am I really concerned what the Nivolumab is doing?

I apologize for being so flip about this. I just feel very brittle and fragile, physically and emotionally. I told my husband tonight that I was tired of being PC and calling myself a lung cancer survivor as I am not a survivor. I am a victim of a disease that is like a serial killer that works from the inside out. I had done all that I thought I needed to do thanks to the American Cancer Society's lung cancer ads that focused on telling me not to smoke-and I didn't. Then to find that the smokers get a better chance at surviving with the Nivolumab than never-smokers like me and I feel victimized and unprepared by the media storm that never once told me that I only needed lungs to get lung cancer

Right now that light at the end of the tunnel is a fast moving train and I have no safe place to hide.

Waiting for the axe to fall.

[CindyA]

Roxanne,

 

I'm sad to read that you are having a hard time right now.

 

You don't have to be PC here. This is YOUR safe place to vent, ask questions, and bounce ideas off of us. 

 

There is HOPE! Would you like for us to try to connect you with another survivor who has been in a similar situation like yourself? We have a lot of mentors who are willing to give you a call and talk to you about their experience & how they are getting through it.  http://www.LUNGevity.org/lifeline  Is the link to get started. I can give my colleague a heads up that you will be filling out this form. Just give me the green light. 

 

***Takes the axe, and puts it back on the shelf.***

[Tom Galli]

Roxanne,

 

An ax never falls on its own accord.

 

You've had the right conversation with your doctor; you've got a plan, and Cindy's idea is a good one.  Connect with someone you can talk to about this nightmare we share.  

 

And, there is always hope, always.  

 

I well recall my chemo conversation with my oncologist.  I remember that time when every other scan would show tumors a little bigger, then a little smaller, then a little bigger.  He didn't know if my second line taxol - carboplatin hardened with Tarcevia was having an effect.  It was maddening!  Tarcevia was causing the worlds worse kind of acne ever seen that was magnified by my bald head, then nausea, and diarrhea, and joint pain, and long bone pain from Neulasta and on and on and on.  You know the drill!  He believed I was having a good enough response to consider my disease chronic and perhaps controllable for some time with chemo.  And that was the course we were on when the FDA approved cyber knife radiation for lung tumors.  I went from hope to NED (no evidence of disease) in 3 days. 

 

I pray you have a post scan consult with your oncologist and the doctor questions if the radiologist looked at the right scan for this one is NED!   And its the right scan.

 

Stay the course.  Talk to a Lungevity mentor.  Go to a support group.  

 

Tom

[Tom Galli]

Roxanne - any update.  Good news I hope!