Looking for possible treatment for advanced NSCLC - 1289831

lgriffith
Posts:2

My wife, age 78 (former smoker, stopped 16 years ago), was diagnosed with stage 4 NSCLC (upper portion of lower left lobe, no mutations found) the end of February 2016. Eventually she received two chemo therapy sessions but left due to a bad reaction to the steroid part of the chemo. She then joined an immunotherapy trial at UCLA Medical Center.

Before starting treatment, they discovered that she had a met to the brain. It was successfully treated with stereotactic radiation. After two immunotherapy treatments she seemed to improved somewhat but developed a diminished balance and ability to walk. This was diagnosed as being caused by a "mass" in the lower spinal column that could not be biopsied. Eleven radiation treatments later, her balance and ability to walk improved somewhat.

Shortly after, she developed extreme fatigue and mental confusion. The cause was diagnosed as sepsis and pneumonia of type Streptococcus. This was successfully treated with rocephan infusions. Her confusion cleared, her balance and ability to walk continues to improve but the fatigue remains.

The issue remains that the cancer has not been otherwise treated since November 2016. The lump in her neck that had been greatly diminished, is now enlarging. Her right lung is clear, her left lobes now appear to be completely without function.

We can return to UCLA Medical Center but the traveling is exhausting for both of us. It almost negates the benefits of treatment. For this reason, are planning on moving to near Chicago fairly soon. We are looking for alternatives other than just giving up.

Question: is there any possible treatment that can have a better outcome than doing nothing? If so, who and where?

Forums

catdander
Posts:

Hi lgriffith,

I'm so sorry to know about your wife's battles with cancer. Excuse the metaphor but it's working for me at the moment. It sounds as though your wife hasn't had much anti cancer treatment at all but what she's had has had some impact. There's a saying that responders respond and it sounds like your wife responded.

Immunotherapy didn't have a chance to show itself; the spinal mets were more than likely already there if they were causing problems just 2 treatments in. There are immunotherapies available in any cancer center so she shouldn't have to travel further than her local treatment center.

Chemotherapies that don't require much or any steroids may be an option. steriods are given to avoid nausea and reactions to things like solvents in taxanes but there are other options for anti-nausea treatments and there are other chemo drugs. Abraxane is one such drug, "- Abraxane doesn’t require steroid premedication that is required before Taxol and can be challenging for many patients" http://cancergrace.org/lung/2012/10/12/abraxane-fda-approval/ The article focuses on a doublet chemo but typically any non platinum drug used as part of a platinum doublet can be on its own.

This has suggestions for those who are elderly and frail that may meet some of her needs, http://cancergrace.org/lung/2016/02/10/gcvl_lu_management_locally_advan…

And just a link to search results, http://cancergrace.org/search-results?q=elderly%2C%20frail

I hope some of this is helpful.
All best,
Janine

lgg1918
Posts: 6

Lgriffith,
I'm just throwing in a kernel of support. I'm so sorry your wife, you, and your family are going through this very difficult time. Although I can't offer any more treatment related suggestions beyond what Janine wrote, I really encourage you to keep your eye on your original message, in case others add more thoughts for you to consider. This site offers remarkable caring and expertise, and it's where I turned during treatment for Stage IIIA NSCLC.

I'm not sure how far you are from UCLA. I live in southern CA (having moved here from Chicago!) so I'm familiar with a number of the various cancer centers. UCLA is one of the nation's most highly rated cancer centers, but no one center can have all the answers. If you haven't done so already, you might consider having a 2nd opinion consult with another highly rated center, City of Hope, just to hear their thoughts on possible options (It's also in the LA area.) I did this, and found them to be so very helpful. Keep in mind many trials offered by renown cancer centers are extended to closer to home big community hospitals, so if another clinical trial is suggested to you, you might look into that. Receiving clinical trial treatments closer to home, wherever you're living, can sure help reduce the strain of travel. And I think we'll all agree reducing as many external stressors as possible can help free up much needed energy.

My heartfelt thoughts and caring to you and your wife. I know the battle well from both sides, that is, being the loving family member, and then being the patient. It's a tough and tricky road, and I found it's perfectly fine to trip and fall on it here and there before gathering myself back up each time to move forward.
LGG

lgriffith
Posts: 2

Thanks for your kind reply.

We have more or less decided to return to the Chicago area where we have family and a place to live. When and how we move back is still TBD but it needs to be sooner than later. Many things to do and sell before the move is finished. Hopefully we can get back there in time for my wife to receive more treatment.

Thanks again.

catdander
Posts:

LLG, Thank you for the wonderful post. You hit the mark on so many fronts. Invaluable!

lgriffith, Good luck to you and your wife.

All best,
Janine