Looking for Hope

[SheriB]

Hello!  My dad was just diagnosed on Friday with Stage IV adenocarcinoma of the lung.  He had a very early stage adenocarcinoma lesion removed a year ago so this is quite a shock.  A recent PET scan shows metastasis to the bone in approximately 3 places (hip, rib, neck) but those lesions are small at 1 cm or less.  He is having an MRI today to see if it has spread to his brain and will have his port surgery on Friday.  I am also following up about genetic testing today.  He was a smoker so the chance of a genetic mutation is likely low.

I am a scientist so I am my dad’s (and my family’s) advocate and spend a lot of my time digging through the literature looking for the latest and greatest treatments and clinical trials.  I know historically this diagnosis has been associated with a poor prognosis, but from what I can see, it thankfully seems to have changed with survival rates on the rise.

I was wondering if anyone has had a similar diagnosis and what your experience was or any words of advice for us as we embark on this journey?

Thank you so much for your help and support.

Sheri

[TJM]

Sheri

You have come to the right place. Board is a bit quiet right now but you should get  numerous responses. Many on this board have been exactly in this spot.

Unfortunately I cannot help much as I have Large Cell, but your in my thoughts. This board has been a God send for me. Hopefully it will help you as well.

Peace

Tom

[Tom Galli]

SheriB,

Welcome here and yes, bottom line up front, many here have encountered and survived Stage IV diagnosis. 

A port is the right call. Was your dad’s removed tumor subjected to laboratory testing for targeted therapy or immunotherapy? These treatments are making a difference, especially for adenocarcinoma. 

Here is suggestion. If the mets in the hip, rib and neck are small and scan clears the brain, then I’d broker a consultation with a radiation oncologist. Perhaps stereotactic body radiation therapy (SBRT) can zap the mets. This might be curative. If not, it will reduce tumor burden and bolster chemotherapy. Some radiation oncologist are getting aggressive in treating distributed mets (Stage IV) with precision radiation. 

Most of us are not scientists, but we are very experienced cancer survivors. So, this is a good place for your questions. 

Stay the course. 

Tom

[SheriB]

Thank you so much for the replies.  I already feel better than I did just 3 days ago after finding this group.  Your experience and guidance means the world to me.  Tom Galli—congratulations on your strength, perseverance, and willingness to continue to help others.  You are truly an inspiration.  Experience counts for a whole lot more than science.  I will definitely inquire about the SBRT.

The first tumor was removed and determined to be adenocarcinoma but they didn’t do any additional testing.  That was in April 2019.  The surgeon was positive he “got it all” and told my parents they didn’t need an oncologist.  Here we are one year later with Stage IV recurrent adenocarcinoma.  The most recent tumor and lymph nodes were already biopsied to confirm adenocarcinoma, but I am assuming they will have to maybe do a second for genetic testing?  I called today to follow up with that but haven’t heard back.  I have a feeling the oncologist is going to get sick of me.

I am praying for a clear brain scan and will keep you posted.

Thank you so much!

Sheri

[Tom Galli]

SheriB,

I assume nothing associated with lung cancer. Ensure whomever ordered the second biopsy forwards it for laboratory analysis to screen for suitability of targeted therapy or immunotherapy. This is so very important that if it were me, I'd demand a copy of the biopsy order

Thoracic surgeons are great practitioners but they are not oncologists. Everyone diagnosed with lung cancer, whatever stage, should have a medical oncology consultation even if it is to establish a regular schedule of scans to catch recurrence early. After sixteen years of life after diagnosis, I still see my oncologist twice a year. Lung cancer is so very dangerous because it frequently recurs, even if the surgeon gets clear margins. How frequently? The study quoted here suggests that 33-percent of stage IA lung cancer patients suffer a recurrence after treatment that resolves to no evidence of disease (NED).

On a more positive note, I bet the dogwoods in Fredericksburg are in full bloom!

Stay the course.

Tom

[BridgetO]

Hi SheriB and welcome. This is a good place to find both information and hope. I agree with Tom about the additional testing. What is needed is biomarker testing, sometimes called tumor genetics. It differs from somatic or germline genetic testing. (you may already know this). Somatic/germline testing determines whether a person has inherited any known mutations that increase cancer risk. Every cell in the body will have the mutation if it has been inherited. The best known of these are the BRCA mutations that increase risk of breast and some other cancers. 

Biomarker testing, which we're recommending, tests for mutations within the tumor itself, not in the body generally, except in metastasis. There are certain ones which are common, or not uncommon, at least, in adenocarcinomas, such as EFGR, ROS-1 and KRAS. For some of these, there are specific kinds of targeted treatment.  So, it's good to know whether a person's tumor shows any of those, before deciding on treatment.

 

Best wishes to you, your father and the rest of your family.

Bridget O

[SheriB]

Thank you everyone for the responses and especially the guidance!!  Your experiences are so important!  We found out this morning that his brain MRI came back completely clear!!  We are so happy and I can't tell you how good it feels not to be punched in the face today with bad news.  We are currently in the process of setting up a radiation oncology appointment and I am hopeful that SBRT will be an option.  My dad's RA doctor also cleared him for immunotherapy so that was another small victory.  I am learning that these little "wins" mean so very much.

I did have one question about the combination of radiation and chemo.  I assume they do chemo first and then radiation?  I know historically they didn't do both at the same time.  Has that changed with SBRT as an option?

I am still waiting to hear back about the biomarker/genetic testing and this is at the top of my list of things to pursue and get going.  I have heard so many good things about targeted therapy and I am praying that that will also be an option.

Thank you again so much, and if anyone has any other suggestions or advice, I am so happy to hear it!

Tom:  The dogwoods and cherry blossoms have been beautiful this year!

Sheri

[Tom Galli]

SheriB,

With conventional radiation and chemotherapy, most commonly they are given together. Generally 30 days (M-F) of radiation and weekly chemotherapy.  With SBRT, I know of folks who've had combination SBRT with chemo and chemo after SBRT.  It is a good question for your radiation oncologist and medical oncologist.

Stay the course.

Tom

[BridgetO]

Yay for the clear brain MRI! For a non-lung cancer, I had concurrent chemo and conventional radiation on exactly th schedule Tom describes.

[Steff]

Sheri-

I'm happy to hear of your dad's clear brain MRI.  My mom received radiation and chemo together as Tom and Bridget have.  My mom also went on to immunotherapy when she had her 1st lung cancer recurrence.  She was a former smoker, as well, and also has RA.  Her original diagnosis was NSCLC, 3a. Luckily, she tested high for PD-L1 and was a good candidate for Keytruda.  Even though her docs were concerned about her RA and immunotherapy, she did fine with it as far as RA goes and remained off of any RA meds while she was in active treatment - for about 1 year.  So, I am happy that your dad's doc okay'd him for immunotherapy, if that is the route they end up taking.

Take Care,

Steff

[SheriB]

Stuff,

Thank you so much for your reply.  It is great to hear that your mom did well with immunotherapy despite the RA.  They are planning on Keytruda, chemotherapy, and radiation.  He will start chemotherapy next week and he has his first appointment with the radiation oncologist this week.

My dad has been so depressed and I am so worried that the side effects from chemo will get the best of him.  Did your mom have bad side effects?  I realize it is different for everyone, but I am praying that it is manageable for my dad.

I was also wondering if anyone has any recommendations for any good books or references to keep my dad motivated to fight?  

I greatly appreciate this forum so much!!

Thank you!

Sheri

 

[Steff]

SheriB-

My mom had typical side effects - flu-like symptoms for about 10 days, starting about 3 days after infusion.  We were surprised that she had these side effects because she had a similar chemo combo a year prior and had little side effects.  Both times my mom had severe acid reflux that was the main cause of her nausea. Once it was under control, she didn't have much nausea, just mainly aches, lack of energy, and an overall blah feeling.  It wasn't a walk in the park, but she managed ok.

As far as being depressed and worried about it affecting his outcome, I think you have reason to be concerned.  I honestly feel that this fight is 75% our will to overcome and trudge on no matter what the obstacle is.  Do you think your dad would be interested in becoming a member of these forums?  I know they can provide a great help for patients and caregivers alike.  LUNGevity also had a support line in which you can get set up with a peer who has gone through something similar.  The main LUNGevity website also has great videos of lung cancer survivors that were very uplifting to me, especially those who had late stage diagnoses.

Finally, here are a couple of books I have picked up along the way that have been an inspiration to me: Second Wind, Thriving with Cancer by Dann Wonser, Roads to Meaning and Resilience with Cancer by Morhaf Al Achkar (I haven't had the chance to read this yet, but met the author behind it.  He shared some stories from the book and it was very inspiring), and It's an Extraordinary Life, Dont Miss it, by Randall Broad.  I got all 3 books from LUNGevity sponsored events and met all 3 authors. They are extraordinary men who share so much hope and resilience.  

Hope some of this might help/answer your questions.

Take Care,

Steff

 

[SheriB]

Steff,

Thank you so much for your response.  It is tremendously helpful as I think my dad will be on a similar regimen.  I will also look into the books you mentioned and I will talk to my dad about joining the forum.  I really think our biggest struggle is going to be his mindset.  

I greatly appreciate the help. 

Sheri

[LUNGevityKristin]

Hi Sheri,

If you think your dad would like to speak to someone one on one with a similar diagnosis, we have a mentor program available.  Here is the information if he would like to get started: https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring

[SheriB]

Thank you so much for the mentor program information.  I have passed along the information to my parents and I think once my dad becomes more settled with everything they are going to look to the site for support.  He has his first radiation treatment today and his first chemotherapy infusion on Wednesday.  I know he is super nervous about side effects.  This has been just so hard, but I am hoping once the anticipation of it all is behind us, we will settle into a routine of treatment.

I guess that brings me to another question.  Do the side effects stay the same throughout the course of treatment or do they intensify with time?  I am sure it varies from person to person, but any information anyone can provide would be greatly appreciated.  

Thank you so much!

Sheri

[Tom Galli]

Sheri,

For me and my 18 infusions of Taxol and Carboplatin, my side effects remained the same throughout treatment. Moreover, they showed up and departed at the same number of hours after infusion. I did not notice any increase in intensity, thank the Lord!

Stay the course.

Tom