Head and neck cancer returns in the lungs after only 1.5 years

Posted by johnnyc @johnnyc, Apr 11 2:40pm

We like/trust our oncologist, but treatment don't seem to work. We have had progression while in both chemo & immuno trials. (3x) My wife's white blood count is now so low our treatments get deferred. The cancer has returned in her lungs and has recently spread to her spleen and a rib.
My question is has anyone sought 2nd opinions and how did they turn out? Also, our doc is considering CarT therapy. Does anyone have any experience with that?
Just looking for the right solution.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 14 1:29pm

Welcome, @johnnyc. I'm sorry to hear that chemotherapy and immunotherapies have not yet produced the results you and your wife were hoping for and that further spread has been detected. That's tough news to get.

You may be interested in this related discussion:
- Head and neck carcinoma: Anyone get a second opinion at Mayo Clinic?
https://connect.mayoclinic.org/discussion/squamous-cell-carcinoma-2/
There is also a support group here dedicated to CAR-T therapy:
- CAR-T Cell Therapy Support Group https://connect.mayoclinic.org/group/car-t-cell-therapy/

Would your wife be part of a clinical trial for CAR-T cell therapy for her type of cancer?

johnnyc | @johnnyc | Apr 15 8:20am

In reply to @colleenyoung "Welcome, @johnnyc. I'm sorry to hear that chemotherapy and immunotherapies have not yet produced the results..." + (show)

Always open to a trail if it leads to success. Can you tell me more about the trial?

Colleen Young, Connect Director | @colleenyoung | Apr 17 6:11pm

In reply to @johnnyc "Always open to a trail if it leads to success. Can you tell me more about..." + (show)

You can call Mayo Clinic to inquire about possible clinical trials available. See more info here https://www.mayo.edu/research/clinical-trials
CANCER-RELATED CLINICAL STUDIES QUESTIONS
Phone: 855-776-0015 (toll-free)

johnnyc | @johnnyc | Apr 26 10:18am

In reply to @colleenyoung "Welcome, @johnnyc. I'm sorry to hear that chemotherapy and immunotherapies have not yet produced the results..." + (show)

We have been part of 3 different trials but because of progression (growth), we have been removed from them all. We are currently under a duo treatment of chem + immunotherapy PLUS following her treatment (every 3 weeks) a cancer pack is plugged into her port for 4 days. We will get our first scan while in this treatment in a couple fo weeks. Hope it works cause it's whipping her ass.

William Olsen, Volunteer Mentor | @hrhwilliam | Apr 26 11:04am

In reply to @johnnyc "We have been part of 3 different trials but because of progression (growth), we have been..." + (show)

hi johnnyc. I think I speak for many here in the head and neck cancer group. We all find it not so difficult to deal with the many problems of treatment and recovery of these cancers, often with much success. But when the very difficult cases such as what your wife is going through now, I like others find it hard to come up with words which can help. I am truly sorry for this weakness on my part. I wish I could reach out and carry you through this. I wish I could fix this. I wish I could do more than pray for you.
Someone once told me that knowing that you are not alone can be a comfort. I believe that is true. This battle your wife is in, the outcome is determined by her doctors skill, God's hand, and your love. Me, I am a stranger to you but am drawn in because I want to help. I just don't know how. Know that you are loved by strangers. Know that you are not alone.

Sue, Volunteer Mentor | @sepdvm | Apr 27 11:40am

So sorry for this poor response to treatment. I have had metastatic SCC for 12 years. First met. to lung a year and a half after surgery, radiation, plus targeted chemotherapy. I have had two lung Mets removed via surgery as well as a met on muscle. Last met to kidney has disappeared with 2 years of Libtayo immunotherapy. All cancer treatment has been done at Mayo in Rochester. Dr Price is the amazing head and neck oncologist there. I highly advise a second opinion at a major cancer/medical center, even if first visit is a video visit. Your wife probably doesn’t feel like traveling much at this point but there is value in a second opinion by a specialist. We have driven from OH to MN for 12 years to receive top level medical care. Don’t give up. Be strong. Are you located near such a facility to request a referral from your doctor?