Looking for some hope

[Spanmer]

Hello all, I wouldn’t normally post in forums, but I’m starting to loose hope for my dad. He was diagnosed with stage 4 adinocarcinoma about 5 months ago. He had it in the bone and chest wall too. He had keytruda over 3 months and 5 rounds of radiation. The cancer shrunk by 40% and no sign of bone Mets which was amazing. Then he developed full pleurisy of the lungs and got put on steroids with some results but still left lung full of inflammation. They also took him off keytruda so he could get over the inflammation. Went back today and they are telling him he won’t be going back on keytruda cause it’s not working. They suspect it was the radiotherapy that shrunk his tumors and now he has plueral effusion bone Mets again and cancer in the renal gland. They want to try him on chemo but he’s not keen on the idea. I hear that once they develop plueral effusion the outlook isn’t great. Can anyone confirm a similar case with recovery with chemo? Many thanks.

[Curt]

I’m sorry to hear about your dad’s diagnosis.  My father too had Stage 4 lung cancer many years ago and I was recently diagnosed.  It is a really difficult disease where hope can be elusive.  I don’t have any direct experience with the issues your dad is facing but others may have.  Hang in there. 

[Tom Galli]

Spanmer,

Welcome here and very sorry to learn of your dad's dx.

You asked about pleural effusions and if they are an indicator of poor treatment outcomes. A pleural effusion is a buildup of fluid between the outer tissue of the lungs (pleura) and the chest wall. This fluid results from irritation and causes include: congestive heart failure, pneumonia and cancer malignancy among others. They are not necessarily an indication of treatment prognosis because removing the irritation (addressing malignancy) may stop the effusion.

I recovered after two recurrences with only chemotherapy as my treatment method. I was found to have no evidence of disease (NED) after my first post surgical recurrence from 6 cycles of Taxol and Carboplatin. But the cancer recurred and again 6 more cycles of chemo knocked down the tumors .  Unfortunately, my NED stage only lasted about 6 months and I needed precision radiation to finally eliminate my lung cancer.  So chemo works, and my chemo recipe was 20 years old.  New chemo therapies work much better and actually have a chance of eliminating tumors. Here is a next treatment possibility (read the Immunotherapy paragraph). Your dad's doctors may want to explore combining conventional chemotherapy (pemetrexed-platinum types) with another course of Keytruda.

As for recovery, I'm a 15+ year survivor of NSCLC (squamous cell) and if I can live, so can your dad.

Stay the course.

Tom

[Laurel]

Tom...you are a blessing to us.  You show us to fight back. Spanner- keep asking your questions here. It's amazing what help, guidance, and hope can be found from those here who are going through the same issues. Hugs and prayers.

[Irwin1]

I second that. Your story is an inspiration and a source of encouragement to just about anyone with LC

[Spanmer]

Thank you for the inspiration. He’s just come out of hospital after battling a week of strong pneumonia. He’s in a lot of pain and doesn’t want to take anything other then panadol. He’s having a pet scan tomorrow and starts chemo on Friday. They found cancer in his sacrum that pressing on his nerves and causing his leg to go limp. They plan on targeting that with radiotherapy. Just really hoping this works. 

[Spanmer]

Also the doctor told him it’s too aggressive and there’s not much hope. That doctor is just an arsehole. Dad was in a good frame of mind until he spoke to that guy. Now he’s told us he’s giving up.

[Steff]

I'm so very sorry to hear all of this, especially about your dad being told there is not much hope.  With recent advances in treatment, there is HOPE.  I'm not familiar with Australia's protocol for treatments, but has your dad had any advanced testing on his cancer, like for various biomarkers/genetic markers?  These tests can give docs more info about your dad's cancer to help better prescribe a treatment approach.  I am assuming since he was on Keytruda initially, that he at least has a test for PD-1/PD-L1?  

I know that things may seem very grim right now, especially with your dad having been in the hospital and struggling with the idea of continuing treatment.  I was at a very grim point with my mom 2 years ago...she was in and out of the hospital, the last time she spent 2 weeks in the hospital for large amounts of fluid on her lung.  She was weak and defeated.  And although she never said she was giving up, I was worried that her body would give up on her.  But here we are nearly 2 years later and she has no evidence of disease - she was an advanced stage diagnosis too and the same type of cancer as your dad.  No part of this journey has been easy and she still suffers from the side effects of treatment, but she lives her life every day.  I guess I am telling you this to show that there is hope.  Every warrior here is the epitome of hope.  Your dad is too.

I don't know if any of this helps, but please know that we are here for you.

Take care,

Steff

[Tom Galli]

Spanmer,

Since frame of mind is so important, remind your dad that lung cancer is always aggressive and the doctor's use of the word "too" doesn't really mean anything.  The precision radiation on the sacrum should eliminate the nerve difficulties in his legs. I bet the tumor in his sacrum is the cause of most of his pain and that should leave also.  That leaves a general assault on the remaining mets and the PET scan should reveal the targets.

When revealed, you might want to discuss things with his radiation oncologist.  Many in the US are getting very aggressive using precision radiation to attack wide-spread (stage 4) tumors throughout the body, often in combination with chemotherapy and in particular immunotherapy.  The non-technical name of this approach is "spot welding tumors".  There is a scientifically recognized ionizing radiation phenomenon called the Abscopal Effect that sometimes causes remarkable reversals in distant metastasis.  I've linked a US National Institute of Health paper that explains the effect.

Tell your dad to put on his battle rattle for another round.  

Stay the course.

Tom  

 

[Spanmer]

Thanks for your inspiration it really helped. Fingers crossed the chemo works

[Spanmer]

He is back in hospital with major chest pain. They are saying his lungs are rejecting the antibiotics. Doesn’t he need to take antibiotics on chemo? It’s his last option. Will they tell him to stop chemo?

[Spanmer]

Just an update. Dad has now had 4 rounds of double chemo and is having another scan next week. He’s been mainly laying in bed, sleeping and has days where he doesn’t eat. Hoping for som good news in his next scan. He’s in good spirits, but is over the pain and breathing issues. 

[Laurel]

Sending prayers and soft hugs to you and your dad. 

[Donnam]

 Can I ask how old your parents were when they were diagnosed? My dad is 85, healthy, and was just diagnosed with Stage 3A NSCLC. He is really debating if he even wants to do the treatment, which I think is pretty aggressive for someone his age. I welcome any thoughts on this. 

[Steff]

Donam-

My mom was diagnosed when she was 60 years old, at Stage 3a, and has had 1 recurrence so far.  My mom is not the epitome of health - she is overweight, has rheumatoid arthritis and chronic pain (all pre-cancer).  Her treatments include: surgery (lobectomy), follow-up chemo and radiation, then immunotherapy + chemo.  No treatments were a walk in the park, but my mom survived and has no evidence of active cancer for over 1 year.  Treatments do not seem as harsh as they once were thanks to advancements in new treatment options and medications to help with side effects.  There are many folks who just take a pill everyday, others have injections of imunotherapy every 3 weeks, and others who have radiation daily for short periods of time, etc.  

You mentioned that you think the treatment plan is pretty aggressive for someone his age...do you know what his docs are recommending?

[Donnam]

Hi Steff - Thank you for your reply. I am so happy to hear your mom is doing well!

They are wanting to do 33 treatments of radiation and chemo for 6 weeks 1x a week. Unfortunately, I do not know the name of  the chemo drugs. I was planning on getting the names yesterday when  they were going to start treatment but the radiation had not been approved so they cancelled until next week.

So my dad was happy and he made an appointment with another oncologist at a different practice to see what they might say. 

This morning he is  back to possibly wanting to do the treatments and meet the other oncologist. I did explain to him in detail what is diagnosis is because I don't think he really understands. He is afraid of treatment and the side effects. The radiation will burn his esophagus. That's a given. Everything else will depend on his body and how it responds. 

He is also considering not doing treatment. No easy answers. 

[Steff]

Being scared of the side effects is sometimes worse that the actual side effects.  I know my mom was very worried about her initial chemo and radiation.  She did end up with a small sore throat toward the end of her treatment, but not too bad.  Some get it worse than others.  I am hearing manuka honey can be a big help with the sore throat.  Chemo is what it is.  Most side effects can be controlled by meds.  My mom's worst side effects was severe acid reflux that resulted in her feeling nauseous.  Fortunately, her docs were able to get a handle on it with meds, then she was fine.  Of course there is losing the hair, it's a big deal for some, not so much for others.  

I am assuming he had a biopsy of some sort since the docs know it is NSCLC, but have they done biomarker testing to see if he would be a good candidate for alternative treatments?

It's hard to be in this position as an advocate and their child.  Know that we are here for you along the way.

Take Care,

Steff

[Tomm]

Hi Donnam   

I'm sorry to hear about the journey your on with your Dad. I can tell you I had radiation next to my esophagus for 30 days and I ate a spoon full of Manuka Honey on the way to treatment and another later in the day. I did not get esophagitis or have any problem with my throat. If you can't get Manuka honey any honey should help. I can tell you that my radiation Doc was very surprised..

Please post updates 

[Donnam]

Hi Tomm - Thank you for your reply. He will be getting radiation over the top of his esophagus due to the location of the tumor. I will definitely get the Manuka Honey! I hope you are doing well! 

[Donnam]

Hi Steff the oncologist did say they would be doing biomarker testing. Thank you for your support and advice! He will be starting treatment a week from Monday. 

[SusanJ]

Tom, was yours metastatic?

[SusanJ]

What can you tell me about Stage IV squamous NSCLC? A relative has just been diagnosed after a CT scan and biopsy and has an appt with the oncologist next week.

[Tom Galli]

SusanJ,

What can I tell you about Stage IV Squamous cell NSCLC? Here is a good resource. In summary, Stage IV most often rules out surgery as a treatment.  Compared to the other form of NSCLC, adenocarcinoma, it does not respond to targeted therapy. It does respond to immunotherapy and an emerging care option is to combine conventional chemotherapy with immunotherapy yielding very good results. While surgery is not performed, sometimes the radiation oncologist attacks widely spread tumors with precision radiation (stereotactic body radiation therapy or SBRT). So I'd suggest a consultation with a radiation oncologist in addition to working with the medical oncologist who designs and monitors chemotherapy. I'd suggest avoiding survival statistics. They are 5-year projections and do not account for the recent dramatic success of targeted therapy and immunotherapy for lung cancer patients. Here is more detail on why to avoid lung cancer survival statistics.

While diagnosed at Stage IIIB with Squamous cell NSCLC, after tumors metastasized to my left lung, I was treated at a Stage IV patient. Most importantly, that was over 15 years ago. If I can live, so can your relative.

Welcome here. More questions? This is the place.

Stay the course.

Tom 

[SusanJ]

Thank you. That's encouraging. Though you didn't have a distant metastasis  (hip). Plus spine and scapula.  After reading-

"Squamous cell lung cancer most often stays within the lung, spreads to lymph nodes, and grows quite large, forming a cavity.”

 

  and the doctor saying he'd never seen a tumor this small spread, we've wondered if there is another cancer. 

But wouldn’t the PET scan have shown? 

And in a biopsy , they are supposed to be able to tell, like- this is not lung cancer in the lung - this is breast cancer that’s spread to the lung.

 

[Tom Galli]

SusanJ,

The operative words for your characterization of Squamous cell are "most often". Mine went to the other lung but did not hit my lymph nodes. I've know other Squamous cell survivors who've had bone and brain mets, some with both.  Small nodules sometimes do not show enough uptake to show a return on a PET scan.  Thus, the lack of PET return you mention. Yes, a biopsy ought to identify the type of cancer with high confidence, so if the diagnosis is Squamous cell from the biopsy, then at least the sampled area is Squamous cell. But, I know of cases where very unlucky people have had two types of metastatic cancer concurrently. 

There is a lot of uncertainty in lung cancer and that is hard to cope with.  The bone mets (hip, spine and scapula) might be ideal SBRT targets so try and encourage a radiation oncology consultation.

Stay the course.

Tom