Hi, I'm Josephine

[JoWell]

Hi everyone:

I'm Josephine.  My mom has stage IV lung cancer, adenocarcinoma, with MPE.  Not confirmed yet (pending final cytology report and genetic testing).  But with the MPE, and they found a stain matches adenocarcinoma in the initial cytology report, we know what we're dealing with.  I was devastated and shocked (my mom never smoked, no cancer in her family).  I cried for days, then I thought I had to be strong and be my mom's advocate.  Then I found this forum, I'm glad I found you.

Tomorrow is our first consultation with her oncologist.  This is the appointment where we'll learn what's in the final cytology report and the results of her genetic testing.  We live in Los Angeles, our city and our state is dealing with wild fires.  The doctor has a family emergency, our appointment was changed from in-person to a video appointment.  My mom and I are disappointed, we were hoping to meet with the doctor, assess our chemistry etc.  But we understand the situation.

I assume tomorrow she'll tell us the treatment plan etc.  The appointment is an hour long.  If you guys have any advice (what to ask, etc.) please let me know.

My mom is with Kaiser.  She's been using Kaiser for a good 20+ years.  Kaiser has been convenient and effective (my dad had a bypass surgery and a hip replacement surgery there, both were successful), but when I ask around about Kaiser treating cancer, I get somewhat negative feedback.  Reading their online resources, it seems they don't offer immunotherapy.  Are any of you familiar with Kaiser and can give me advice there?  Advice on anything.

Open enrollment is coming up.  Shall I try to switch and get my mom treated at Cedar Sinai or City of Hope?  Is switching to a new medical provider isn't viable as my mom now has "preexisting" conditions.  So many questions to ask.  Appreciate any information you guys can offer.  I'll be a regular here.  Talk to you soon.

Josephine

[GaryG]

Hi Josephine: Welcome here and  I am so sorry about your mom. I am sure you will get many opinions and advise shortly from other posters.

First I hope you are familiar with lung cancer. If not please spend some time reading articles on the website to gain some knowledge. You will also get links from other posters on the subject.

As for the video appointment, I have them with my oncologist and as long as you ask the right questions you should be ok. There are so many unanswered questions like who  did cytology report and genetic testing? did your mom have a PT scan? is Kaiser cancer clinic? How did you meet the oncologist?

In any case I am stage 3b cancer patient and my preference is to be treated in a center/hospital where they specialize in cancer treatment. My cancer center for instance has a tumor board that meats every week, examine every case and decide on a course of action. A tumor board is a collection of specialists like oncologists. radilogists, surgeons, and pulmonologists among others. You have all the expertise you need in one room so there is no need to go chasing thosee experts at their offices.  You are in LA so you should be able to find a good and reputable cancer center.

Other patients follow the lead of their primary doctor who guides them and chooses other specialists for them. 

So again welcome and please do not hesitate to ask questions at any time.

GaryG

 

[Tom Galli]

Josephine,

Welcome here. Lousy news about your mom's diagnosis. While her pleural effusion simplified the biopsy, be cautious that effusion tends to recur and can make it difficult to breath. The fix is draining (or drawing off the effusion with a large, very scary needle). For some, a drain is kept in the chest and the effusion drains to a container that one has to lug around. In my treatment, I had a 6-week relationship with a chest tube and drain receptacle (my nurses called it a "bucket.)"

My first question would be about Kaiser's immunotherapy capability. It is hard to fathom these days that a medical institution like Kaiser wouldn't be capable of treating with FDA approved immunotherapy drugs. Perhaps they've not update their online treatment modalities.  The obvious first question is does your mom's adenocarcinoma display tumor markers (genetic testing) that point to targeted therapy as a method of treatment. Additionally, does her metastatic fluid show PD-1 or PD-L1 expression. These would indicate suitability for immunotherapy. I would expect her doctor will prescribe a treatment plan based on targeted therapy or immunotherapy or a conventional chemotherapy. She could also have combination chemotherapy with conventional chemotherapy and immunotherapy. One suggestion is to ask the doctor if there is an objection to recording the consultation session.  There is a lot of new vocabulary with lung cancer and you are bound to hear words that you won't understand, first pass. Perhaps not even on the second pass.

The "good thing" (there is really no good thing about a lung cancer diagnosis) is that targeted therapy and immunotherapy are available and effective.  When I was diagnosed, back in the lung cancer "Jurassic Era," these treatments didn't exist. And, because these new treatment work so well, the survival statistics you've likely Googled are not accurate. Here is something I suggest for the newly diagnosed. If her treatment involves infused chemotherapy, please pay particular attention to Step 6.

You'll soon meet lots of folks, survivors and caregivers like yourself. We've got lots of experience surviving treatment and side effects. You'll find this to be a very good place to ask questions.

Stay the course.

Tom

[Sabacat]

Hi Josephine, and welcome.  I'm not one of the long term survivors here YET, but I intend to  be!  This is a great group of folks, with tons of experience and an uplifting attitude, so ask any and all questions you may have.  You mentioned MPE -- in your Mom's case, is that a PLEURAL effusion, or PERICARDIAL?  I have both (lucky me but the pericardial is the more potentially hazardous.  It is always hoped that  those will diminish with treatment, but it's important to keep an eye on them, usually with echocardiograms.  I've had the pleural effusion drained, which was no big deal at all (of course, the needle was in my back, so I couldn't see it.  Much less scary that way.

Like Gary, I prefer to be treated in a major cancer center, but that does involve a fair amount of driving (about 4 hours each way) - luckily, my husband is a good sport about that, but distance can be a factor to consider.  I wish I knew more about the insurance situation, but I'm over 65, so on Medicare.  Foolishly, I went uninsured for my last 9 months pre-Medicare  because I was so healthy (I thought!).  Luckily, I wasn't diagnosed until  several months later.  

[JoWell]

Thank you so much for your replies. 

I can tell that you are well taken care of by top doctors at world-class facilities.  And you are dearly loved by your families.  My mom is deeply loved by our family, I just need to ensure that she's getting good medical care.

My mom has been feeling weak for a year.  Last August she had a full-body CT scan, and was given the all clear.  Since March I moved in with my parents to quarantine together (easier that way as I can shop for them), I noticed that my mom slept in more and took more naps.  She and I agreed to see her doctor once the pandemic is over or when it is a little safer to go out.  My mom is 68.  In the past she had periods of feeling weak, but nothing a cross-country trip or a cruise vacation wouldn't fix.  So we weren't too worried, we agreed that she should exercise more.  Fast track to mid August (it pains me to think that we wasted 5 months to get her care), one night her legs began trembling when making dinner, and she complained about shortness of breaths.  That night I send her to the ER.  Doctor told me my mom had just "a little fluid" in her right lung and he would keep her in the hospital.  That little fluid turned out to be 1200ml of MPE (pleural effusion) on 8/14.  Initial cytology report was out on 8/19 indicating adenocarcinoma cancer, genetic testing was ordered on 8/20.  Her oncology was assigned to her.  There are only 3 oncologists at our Kaiser location to treat her illness.  Yes, fully understood MPE would make its way back, my mom drained another 1500ml on 9/4.

She had CT scans and MRI while at the hospital, no PET scan.  She has enlarged hilar lymph node(s), I believe a total of 3 enlarged lymph nodes.  No cancer in other parts of her body.  

Past several weeks have been a torture.  Lots of gloom news, numbers quoted on ncbi.nlm.nih.gov (and other sites) were swords going through my heart.  Now because of you, I'm cautiously optimistic that my mom can live longer than 3 to 12 more months.  God I hope she will.  I can't lose her.

Thank you again.  Armed with the info you offered I'm feeling a tad more confident for tomorrow.  I'll be back.  TTYL.

 

[Babs]

Josephine,

 

Hi and welcome!  So sorry that you are going through this.  I was diagnosed last August with stage 3 NSCLC Squamous.  I went through chemo/radiation.  It has come back in the same spot and has not spread.  My original diagnosis was over 1 year ago.  I’m still here and I don’t plan on going anywhere anytime soon.  PLEASE stay off the internet!  I know it’s hard, but it’s old news that will just depress you.  Instead come here and read about all of the success stories.  
 

Your Mom is lucky to have you there to help her and care for her.  I have a daughter who is 38 and she is my rock!  I don’t know what I’d do without her. 
 

Hang in there!  You can come here anytime and ask questions or just vent.  It helps a great deal.  Keep us posted.  
 

Babs

[LUNGevityKristin]

Hi Josephine, I'm sorry to hear of your mom's diagnosis.  Here are checklists of questions to have with you for your telehealth visit: https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals

 

You can print out the sections that apply to your mom.  Please keep us updated!

[LouT]

Hi Josephine,

Welcome to our forum.  You are already getting great input from some of our family so I'll just say hi and will offer any support I can along the way.  

Lou

[JoWell]

Hi, I'm back!

Joined my mom's first appointment w/ her oncologist yesterday via video.  My mom is EGFR positive, her doctor put her on Tagrisso.  My mom's PD-L1 is also high.  I asked about Immunotherapy.  The doctor said Kaiser does offer the treatment, but for now the first line of treatment for my mom is Tagrisso.  

I asked about if my mom were tested for ROS1, ALK, KRAS, BRAF, etc.  The doctor said that those results weren't back yet; but these mutations were "mutually exclusive" meaning that my mom is only EGFT+.  The doctor will give my mom a panel of blood tests after two weeks (one of which is to check her liver), and will see my mom two weeks after the blood tests are done.

I didn't successfully record the appointment (forgot to hit the "stop recording" button).  What do you guys think?  I think it's quite straight forward, standard treatment for EGFR.  Shall I go get a 2nd opinion?  From reading our forum and "googling", I think Tagrisso sounds right.  What do you guys think?

I'lI join the EGFR discussion board after this post.  But please do reply to me here.  I'm interested to hear your opinion.  Thanks much as always!

Josephine

[Tom Galli]

Josephine,

Tagrisso is good stuff for EGFR mutants I hear. Nice to know about PD-L1 expression in case immunotherapy is needed. Sometimes, cancer mutates against targeted therapy and it is comforting to know immunotherapy is a possible second line treatment. 

Stay the course.

Tom

[Judy M2]

Josephine, I'm also an EGFR "mutant" and have been on Tagrisso since March. I'm had positive results and my oncologist is happy with my scans. I've had no side effects. At Stage IIIB, my oncologist preferred targeted therapy over immunotherapy. 

Hope your mom does well on Tagrisso!