HELP! Mom has Stage 4 Lung Cancer - Need Advice

[Eugenia Gregorio]

My name is Eugenia and my mom, Theresa (Terry), has very recently been diagnosed with Stage 4 Lung Cancer.  She is only 72 and stopped smoking over 40 years ago.  She worked in a laboratory doing cancer research for 40 years before retiring 10+ years ago and was handling chemicals for cancer research her entire career at NIH and Human Genome in the DC Area. 

She started having back pain in October and it took almost 2 months to determine what was wrong.  First they thought she had pulled her back picking up her grandson, my 10 month old son, and the doctors gave her muscle relaxers.  Then, the doctors thought she had pneumonia and she was given antibiotics.  Then, she went back to the hospital because the antibiotics were not working and they did a CT scan and found a mass in her left lung.  It has been a long and awfully slow process and after multiple hospital visits, biopsies, scans, etc. and us pushing things along, they found that the cancer spread to her bones - spine, chest, and head.  Her spine is covered, which is what is causing her back pain but she is now on pain medication to keep her comfortable and help her get stronger.  She starts cancer treatment next week and she has a positive state of mind so far - she is ready to fight this!  What can I do to help her stay positive and get healthy and strong?  I live in DC but was there for 2 weeks over the holiday helping take care of her and my dad and working with doctors to come up with a plan quickly.

She is being treated at Zimmer Cancer Center in Wilmington, North Carolina and they live one hour south.  The oncologist wants to treat her with 3 drugs - 2 chemo drugs plus keytruda - every 3 weeks x 4 rounds.  We are still waiting for her gene marker testing to come back to know if there are other drugs that might work better for her situation.

Does anyone know if Zimmer is a reputable cancer center?  Should I be looking for a second opinion or clinical trials at a research institute and if yes, how do I go about doing that?  What alternative treatments, food, medicine, should we be considering?  I don't want to miss any opportunities for treatment and will do anything to help her fight this.  

Thank you for any advice you might have for me and my family.  Happy New Year :)

 

[Steff]

Eugina,

I am very sorry to hear about your mom's diagnosis. My mom has lung cancer too - non small cell adenocarcinoma. She is on her 1st recurrence. She took alimta+carbo+keytruda (I am assuming this is also the chemo combo your mom is being prescribed). My mom had over 90% of cancers cells with PD-L1, so she is was a great candidate for Keytruda. Her cancer responded well, like many others who have been prescribed this treatment.

I am unfamiliar with the cancer center your mom is going to and can't suggest any other sin the area (I live on WA). You can get a second opinion anytime, even while your mom is getting treatment. My mom did not get a 2nd opinion for her initial diagnosis or for her recurrence. Both treatment suggestions were the standard of care at the time and we did not feel there was any reason for a 2nd opinion. But everyone is different in choosing whether or not they seek a 2nd opinion.

As far as supporting your mom, let her eat what she wants. A well balanced diet is always best, but chemo can affect what tastes good and what sits well. Let her vent if she needs to and let her know how strong she is for taking on this battle. 

Please remember we are all here for you with questions you may have and support you may need.

Take care, 

Steff 

[Tom Galli]

Eugina,

As a LUNGevity moderator, I can't suggest or comment on hospitals or medical providers.  However, the Internet ought to have a lot of information on cancer providers in the Wilmington area.  You may need to do a lot of filtering to sort the patient comments from the advertisement and hype.

Your mom is receiving Keytruda, a very effective immunotherapy drug in combination with conventional chemotherapy.  Let us know the results of the gene mutation testing and the names of the conventional chemotherapy drugs she'll receive.  Here is some information on Keytruda and how immunotherapy drugs work.  Here are some suggestions to prepare your mom for infused chemotherapy.

Keytruda in combination therapy with conventional chemotherapy is a pretty common treatment now.  I chose to have my chemotherapy at a cosy small nearby clinic because of the Cheers effect---everyone knew my name.  You may consider finding a nearby clinic close to her home compared to a large hospital setting.  One can receive chemotherapy at a local clinic and keep the medical team at a large hospital.  That plan might make it easier on your mom by reducing the treatment travel time.

If you invest in alternative treatments, ensure consultation with your mom's doctors to avoid adverse side effects between the alternative and science-based treatments.

As Steff said, this is the place for questions.

Stay the course.

Tom

[Eugenia Gregorio]

Thank you, Steff and Tom.  My mom has non small cell adenocarcinoma and they are starting with alimta+carbo+keytruda next week.  We are still waiting on the gene testing to come back so targeted therapy may still be an option.  I'm happy to know this is standard practice.   I still feel like I should be doing more and researching clinical trials or special food to eat, something to help more!  It's going to be hard for me to just sit back and let the oncologist follow his plan and wait to see what happens.  The doctor did not answer my "what is the goal of this treatment" very well and responded with "to tolerate treatment".  When I mentioned a second opinion or consulting a research hospital, his ego kicked in and he blew it off.  I don't understand if the goal of treatment is to slow growth, reduce the cancer that has spread, gain months of life, etc.  What is your understanding?  Thank you!

[Tom Galli]

Eugenia,

Combination chemotherapy with Altima, Carboplatin and Keytruda is curative. So the immunotherapy is given with the expectation that her cancer can be elimated.  While her oncologist’s bedside manner needs vast improvement, his answer was precise. If your mom can tolerate this treatment, there is high probability her tumors can be eliminated. Immunotherapy can be very effective, especially when combined with conventional chemotherapy. 

If her targeted therapy markers indicate suitability for a new drug, she can stop the immunotherapy and switch to the targeted therapy or continue with the combination immunotherapy and hold targeted therapy in reserve. If the immunotherapy reduces her tumor size, a radiation oncologist might use precision radiation to fry the less cooperative tumors.  Fifteen years ago, there was nothing but Taxol and Carboplatin and that was a shot in the dark. Now we’ve got effective options and far more than hope in the treatment drawer. 

Don’t hesitate for a second opinion, but if surgery has been ruled out, it is hard to fathom a more effective treatment than is already scheduled. I would suggest a consultation with a radiation oncologist in the event the immunotherapy eliminates most of the tumors. The objective is to learn if precision radiation could be either added to her current chemo or used after to zap uncooperative mets.  Radiation oncologist are getting very aggressive in using precision radiation with curative intent with stage IV disease.  I hope this answers your question.

Stay the course. 

Tom

[Eugenia Gregorio]

Thanks, Tom.  This is really helpful and great to hear.  Just to give you more detail...she has a mass (tumor) in her left lung but it has spread quite a bit, which is why surgery and radiation are no longer options.  They did a pet-scan, CT scans, and MRIs and she has the disease throughout her entire spine - spots all over up and down - and not really one or even a few tumors on her spine - it's just spotted up and down in each vertebratae.  They also found "spots" on her scalp (not brain) but they weren't 100% sure it was the cancer but it seemed likely.  There were some other bone spots in her chest like scapula, etc.  It has only spread to her "bones" so I guess that is good?  In this case, do you think the measures being taken still make sense as a curative measure? I don't know that there will be a chance to target one location outside of the lung unless they can eliminate the bone areas.  Thank you so so much!

[Rower Michelle]

Hi there.

You’re Mom is lucky to have such a warm & caring daughter!  Unfortunately her experience is not uncommon & lung cancer isn’t on high radar in the primary care office.  Now that you have the right diagnosis & bio-marker testing pending you’re doing what you can for now until treatment gets underway.  

For the what else that can be done while you wait:

1. Take a look at the Cancer Fighting Kitchen by Rebbecca Katz.  Great Food as Medicine resource. 

2. My new favorite book- The Anti Cancer Lifestyle by Lorenzo Cohen from the MD Anderson Integrative Medicine Program. 

It sounds like your Mom’s treatment plan is on point so you may want to hold the second opinion until the bio marker testing comes in. Most oncologists are science driven & not very personal. It’s important to feel comfortable & have confidence in the team.  One of my peers got a second opinion after Dr NoBedsideManner showed up only to find the  next doctor was even worse than the first. 

Your Mom can ask for a referral to an Integrative Oncologist/MD.  There’s a TON of info on complementary treatment.  I wouldn’t recommend the DIY approach.  Many of us here use complementary medicine & have had favorable response.  

The hardest part right now is waiting, waiting & waiting. 

We’re here for you!

Michelle

[Eugenia Gregorio]

Thank you, Michelle!  Your notes are helpful   Do you recommend the Anti Cancer Lifestyle book for me to get for my mom or better for me to read?

[Rower Michelle]

I would recommend it for both of you.  The Cancer Center is likely to offer free wellness programs like yoga & meditation which are beneficial for the immune system. You might have to ask about them. My cancer center has a ton of classes but they didn’t promote them. There was a brochure lying around the waiting room so In asked the social worker about it. 

[Tom Galli]

Eugenia,

Okay, I understand why radiation is out of the mix.  Still, if the combination chemo including immunotherapy takes hold, all of those "spots" could be eliminated. Then if the large tumor in the lungs is knocked back, precision radiation may come to the party.

On bone mets: 15 years ago with only Taxol and Carboplatin as treatment, bone mets were almost untreatable. Now with immunotherapy, they can be successfully eliminated.  I will however temper my optimism to ensure you understand that your mom's lung cancer is wide spread and needs to be arrested quickly.  That supports her doctors decision to start treatment now with combination chemo and immunotherapy and await the results on targeted therapy biomarkers.

I'd still have a consultation with a radiation oncologist about using precision radiation.  Lots of little spots can be effectively zapped, including those in her bones.  I agree that her disease is too widespread for conventional radiation but SBRT, IMRT and IGRT make spot treatment possible.  Here is information about precision radiation. 

Stay the course.

Tom

[Eugenia Gregorio]

Thank you, Tom!  My mom's second treatment is tomorrow and I'm going to ask her medical oncologist if we can meet with a radiation oncologist to talk about other options.  We will also get results about the gene testing tomorrow too.  I think they only did testing for the 4 main mutations (PD-L1, EGFR, KRAS, ALK).

I've heard that it can be incredibly beneficial to have tests for the multitude of more rare mutations, by requesting that a sample of her tumor be sent to FoundationOne.   Have you heard of this?  Her tumor was tested a month ago so I'm not even sure this is an option now to ask about how and not sure how to ask the doctor for it.  I asked him about a second opinion or going to Duke at our first visit and he got very defensive insisting they have everything and he knows everything.It would be nice to get these other tests done because if Keytruda isn't successful then we can have a backup clinical trial ready to go.   What do you think?

Thanks again!

[Eugenia Gregorio]

Thank you, Tom!  My mom's second treatment is tomorrow and I'm going to ask her medical oncologist if we can meet with a radiation oncologist to talk about other options.  We will also get results about the gene testing tomorrow too.  I think they only did testing for the 4 main mutations (PD-L1, EGFR, KRAS, ALK).

I've heard that it can be incredibly beneficial to have tests for the multitude of more rare mutations, by requesting that a sample of her tumor be sent to FoundationOne.   Have you heard of this?  Her tumor was tested a month ago so I'm not even sure this is an option now to ask about how and not sure how to ask the doctor for it.  I asked him about a second opinion or going to Duke at our first visit and he got very defensive insisting they have everything and he knows everything.It would be nice to get these other tests done because if Keytruda isn't successful then we can have a backup clinical trial ready to go.   What do you think?

Thanks again!

[Rower Michelle]

Hi there! 

Thanks for the update. With regard to the biomarker analysis & Foundation One:  The answer is it depends on how much tissue sample was used in the biopsy.  

The local hospital tested me for PDL-1, EGFR & ALK.  I had a low PDL, negative EGFR & seemingly negative ALK.  

Since there were 6 samples,  my oncologist sent the biopsy to Foundation One & I’m really glad they did.  Foundation One had more sensitive biomarker testing.  Turned out I’m ALK Positive.  I’ve seen happen with other patients too.  

The other benefit of Foundation One is they will do a full panel & recommend any clinical trials.  This is a long shot as it’s for really rare cancers.  

Based on my experience I would recommend the FO testing.  

Hang in there Eugenia- in our town the best docs have lousy bedside manners.  

Good luck tomorrow!

 

[Tom Galli]

Eugenia,

Sending a sample to FoundationOne (FO) is a good alternative if there is remaining biopsy tissue.  If another biopsy needs to be performed to obtain more tissue, then you'll need to consider potential impact of the biopsy on mom's current state of health. As Michelle says, markers for rare cancers are a long shot because so few of us have rare strains of lung cancer.

I don't know why doctors get defensive about second opinions.  They get paid.  But, what would your second opinion accomplish at this point in time?  I believe your mom has a PD-L1 expression of greater than or equal to 50% Tumor Proportion Score with no EGFR or ALK expression or else she would not be having immunotherapy. In these circumstances, combination conventional chemotherapy and Keytruda is the first-line standard of care for Stage IV NSCLC.  So unless FO's test reveals a very rare form of cancer, I think there is a very high probability a second oncologist would have your mom on the same treatment.  That said, investigating and planning for a clinical trial if her current therapy is not successful is prudent. Lung cancer is persistent.

In that vein, read this about NIH Intramural Cancer Treatment program.  These folks may have some interesting treatment approaches and all it takes to engage them is an email.  But, I'd only investigate at this juncture.  Give Keytruda a chance.

Stay the course.

Tom