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Spanmer

Looking for some hope

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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.

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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. 

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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 and 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

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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.

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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. 

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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.

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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

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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  

 

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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?

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