Introduction - joiathome (jo) - my husband has stage iv nsclc adenocarcinoma

[joiathome]

Hello all 

My husband George, was diagnosed with stage iv nsclc adenocarcinoma (metastasized to lymph nodes and bone) in January (started in Nov with a severe cough originally diagnosed as walking pneumonia).  Started treatment on Keytruda in March.  He also underwent 15x radiation doses to reduce size / issues with compression on esophagus (palliative) making it difficult to swallow.   An early CT scan showed aggressive progression (doubled in size) so now shifted to chemo (First round was may 16 - plan for 3x additional).   He has had many symptoms.   Chronic Cough, little sleep, difficult to eat, depression, chest pain, back pain, hip pain, no appetite, swelling in feet, ankles, legs (edema like), difficulty moving - progressively weakened, and at this point has lost 20+ pounds.   Feeling a bit helpless and just trying to cope and get by, one issue and one day at a time.  

Have been reading and watching through the forums and thought it was time to connect.  I appreciate and applaud the many lovely caring people here willing to share their experiences!

Jo

[BridgetO]

Hi Jo and welcome. I'm sorry to hear about your husband's diagnoses and his symptoms. Is he getting palliative care?  It sounds like he's definitely a canidate because symptoms are impairing his quality of life. (I'm not talking about hospice). Katie B has recently posted some things about palliative care. Let us know what questions you may have and how we can support you.

Bridget O

[Neverstopfighting]

Hi Jo,

Welcome to the Lungevity.  I'm a newbie but felt at home here immediately.  You will definitely find help here.  I also pray you find some hope as well.  

I too was diagnosed with walking pneumonia from a chest xray after a 5 month cough.  The "bacterial infection" ended up being a tumor.  

You are doing great, just being on this board, looking for answers, sharing your journey is brave and takes courage.  You should know there are so many people, caretakers and loved ones of patients, who've experience the same as you on this board.  Search and connect.  The social aspect of treatment is so under appreciated.  

Wish you all the best,

Joe

[Rower Michelle]

Hi Jo-

My story is very similar to Joe’s- so hello from a Stage IV ALKie.  I have a mutation that allows me to take a targeted therapy.  Prior to the biomarker treating, my symptoms were very similar to your husband’s. 

The symptoms can be managed to improve his quality of life.  This is a journey like none other you’ve been on before.  It takes a while to have the confidence to navigate the healthcare system and advocate for your family.  You will need to be very vocal, the squeaky wheel gets the grease.  You are in the driver seat!  Do not settle if anything doesn’t look or feel right.  Trust your instincts.  Speak up, ask questions, challenge assumptions. 

Have you considered a second opinion?  That can be done at anytime during the course of treatment. 

Practically speaking, the clinic staff needs to be paying close  attention to the weight loss.  You might want to find an Integrative Medicine practitioner to address nutritional approach’s (like high calorie smoothies). Your hubby’s mood will improve as he begins to feel better.  

Let us know how things are going and we’ll jump in to help.  

We’re here for you!

Michelle

[joiathome]

Thank you all for your kind words and encouragement!    

@BridgetO:  On palliative care,  he was just referred.  Our first appointment is at the end of next week.  Looking forward to some new eyes and approaches on the symptoms!!  Although I do have to say his oncs have been very engaged, listen well and are active in looking for solutions and open to alternatives (we feel very fortunate on this front).

@KatieB:   I might not have a precise understanding, but he had a CT scan to check on his lymph nodes due to the swelling.  That scan was earlier than intended for the status check.  Dr talked about the pseudo-progression scenario, but felt the growth was way too aggressive (doubling in 10 weeks) for that to be the case.   We also discussed whether we should add chemo vs switch and they recommended in his current state health that it would be too harsh on him to do both.    There are resources, but the social worker and our nurse navigator don't seem to play that overall role (the onc himself has been the most involved in all the symptoms - along with the radiation onc - as a team).  I am hoping the palliative team will step in here now and provide more symptom support overall.     

@Joe:  Thank you for support and hope.   Just writing and reading the responses does make me feel less alone!

@Michelle:   I am very much trying to be that advocate. Talk about feeling inadequate!!   What a roller coaster!   We are at Kaiser in Northern California.  We did engage UCSF for a second opinion so we do have a Dr there that we met with.  We now send her all the reports and results and she reviews (sometimes talking to the UCSF tumor board) and sends her findings and reports to our primary Onc. Surprisingly, they seem to be collaborating pretty well  (For example, UCSF recommended we evaluate putting in a stent to help his cough & swallowing - so we will have a consult with a gastroenterologist (hopefully soon).

It is all just overwhelming right now.   Lot's of prescriptions trying to address all the symptoms.   Mostly I just want to help make his days as bright as possible and encourage optimism of treatment helping, but that's a tall order right now (and his unwillingness to eat is making all worse).     

Thank you all again for being here and letting me release!

Jo

[Neverstopfighting]

Jo,

It is amazing that your primary doctor took advice from second opinion doctors from different hospitals.  Telling my doctor another doctor says he is wrong? Whoa. And them listening?  Double whoa.  So you've got a great team with backup data.  An integrative oncologist may help. I'm seeing mine for the first time next week. 

And always know that people are reading your entries and hurting with you. I'm glad to be of any help. 

With an aching heart,

Joe

[Curt]

Hi Jo.  I’m sorry to hear about your husbands diagnosis.  My father had Stage IV lung cancer and I was recently diagnosed at Stage 1.  My dad liked fruit smoothies (we’d hide veggies and protein powder in them) while he was undergoing treatments.  Milk shakes also.  I hope his symptoms improve and you get some of of those bright days you are hoping for soon.  

[Rower Michelle]

Hi Jo-

You’re doing a great job!  There are big guns on the team at UCSF.  You may want to check out the Lung Cancer Living Room on YouTube ( Formerly the Bonnie J Addario Foundation now Go2Foundation).  You might consider attending in person.  It’s a wonderful organization where you will feel supported and inspired.  

Have faith that you are doing all that you can.  

Michelle

[BridgetO]

HI Joe, Here's my experience with a second opinion , Before I had my lung cancer I had an unrelated primary cancer that was stage 3  and aggressive.  I belong to an HMO that has its own hospital and doctors. I had some concerns about the course of treatment that my medical oncologist proposed. I had a rare type of cancer for which there were no published studies.  I wemt for a second opinion from a doctor at our local teaching hospital who had clinical experience  with my type of cancer. I had to pay for it myself because the HMO wouldn't pay for an opinion from an  out of plan doctor. I went back to my HMO doc and told her I wanted the treatment recommended by the second doc and she agreed to do it.Partly, i think, because the second doc was very well respected in our field and partly because she thought my prognoss was "dismal" anyway and so why not? I'm really glad I got the second opinion and that my in-plan doc was open minded. I'vr been NED on that cancer now for 8 years.